As part of our Pen Pals project with British Council, cohorts of UK, Indonesian and Nigerian artists corresponded with one another, learning, sharing and developing their practice together.

Explore the full group chat below from the contingent made up of Hana Madness (Indonesia), Pelemo Ava Nyajo (Nigeria) and Shaun Fallows (UK). 

Browse our full Pen Pals event page here for more, including showcases of work by each artist in an individual capacity over the course of the programme.

Content note: the discussion below includes sensitive topics and strong language which may not be suitable for all audiences. Click here for a list of potentially triggering aspects. 

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Pen Pals groupchat: Hana, Pelemo & Shaun

Hana:

Hi Pelemo & Shaun! Finally I got you both! We can do the conversation here and I hope we can create a safe and supportive space for all us to share anything related to our lives and artistic practices #NoShameNoStigma

Pelemo:

I’ve been doing a lot of work in the civic space during recent times. I work with the Netherlands Ministry Of Foreign Affairs’ Youth Advisory Committee and I’m currently doing preparations to go to the Netherlands for a meet up week with my colleagues. It’s been really hectic but im trying to stay sane through my art as well :)

Hana:

I had experienced so much abuse since I was little. In any form including in the circle of family and friends. But it was me long time ago when everything was fucked up. I’m happy to finally be able to normalize mental health issues in my big family (who previously misstreated me in so many bad ways) as well as in my circle of friends. It takes a lot of tears n blood for years and years. But small progress is still a progress, right? Also it’s beyond my expectation to be who I’m today. To be able to enter the mainstream art debate is such a thing to me considering the stigma about people living with mental disabilities is really bad in Indonesia.

Pelemo:

Oh dear Hana, I just read your messages and watched your wonderful video. It’s beautiful to see the amazing things you’re doing and creating, your resilience and beautiful spirit. Thank you so much for sharing, I am so glad to be a part of this project with you guys.

It really is a struggle to normalize mental health issues, even here in Nigeria as well. The stigma is heavy and the misconceptions are even worse. It’s crazy, but with each little step we’re trying to normalize and demystify truths about mental health. I went through your instagram page and You’re doing amazing work through your art, Hana Your younger self would be so proud!

I’m so glad we have this collaboration cause you’ll get to learn more about the art of poetry and we’ll get to learn more about visual art.

Hana:

Hi Shaun, I wanna know how did you start as an artist? What inspires you the most?

Shaun:

Hi Hannah I’d say the thing that got me started as artist was my love of music and my cousins being in bands I saw them and wanted to try later because my voice wasn’t so great I felt more comfortable just reading them on stages. The everyday day things that able bodied people take for granted inspire me, talking about access issues with my wheelchair and of course the search for lasting relationships. All these things inspired me. I want to show that we are just people too and not just charity to be helped. How about yourself can I ask you both the same questions?

Pelemo:

What inspired the name “Hana Madness”?

Hana:

Thank you so much for your kind words, Pelemo. So the name of Hana Madness firstly came up because I used to listen to Madness (it’s a Ska band from England) during my high school years. And there was a friend in my music scene who started calling me with “Madness! Madness…”

Hahaha at that time I was like “I think Hana Madness sounds great and really suits to my personality which was chaotic, and nomaden because I once got kicked out by myy parents then often run away from my family house since I was in junior high school. Until I got to know about mad liberation & activism. So ya I think I chose the right name as my identity which is worth to celebrate.

I totally agree with you Shaun, if we are just like any other human being, we are equal. What makes us different is we have different kind of needs access as our right. And of course we don’t want to be pitied. Also, inspiration porn really bothers me…

Shaun:

Disability is always going to be part of me and I’d never change it as it shapes my ideas and view points uniquely but also I’m making poetry to say we are more than just the disabilities.

Hana:

About the inspiration behind my work and how I started…
I first discovered art as a cathartic medium in maintaining my sanity during my high school years. It was my response to a mental crisis that I had since I was a kid. I spent my childhood in a quite toxic environment. I was far from being supported, feeling lonely, as well as verbal, physical, sexual violence that I had experienced from some people.

Those contributors have slowly shaped me mentally at a quite extreme level, from conflicts within myself until with my family. And it happened since I was in junior high school. I also was wrongly treated at that time as they saw me physically healthy. It worsen the situation because I did self-destructive behaviors and even attempted suicide because I couldn't understand what was really happening to me. Like being unable to sleep for days, feeling depressed, delusional, hallucinated until suicidal for no reason and it caused a prolonged conflict with my parents. And because of that, I often run away from home, my school at that time was such a big mess. So I just depended on sketch book and drawing pen as my loyal friends. I found comfort in writing anything about my feelings until doodling. And of course I did that only for myself to keep me sane without imagining that I would end up getting the appreciation like nowadays.

At first I often uploaded my works such as on myspace, friendster, until deviantart. Until 1 year after I graduated from high school, in 2011 I got the first commercial client that print out 5 pieces of my works into lighters as much as hundreds of thousands pieces to be sold in various supermarkets in Indonesia.

But anyways, long before that, my father once said “No one in my family can be an artist!”. I think it was because my family is really conservative and they didn’t understand anything about the art world. But I kept on creating art no matter how.

Until there was a moment in 2012, whet I got the change to be one of the speakers on a very famous tv show which talk about “They Say I’m Crazy”. I was 19 at that time and became the one and only female speaker. In 2012 I realized the issue of mental health was still considering as a taboo thing to be shared to the public. I felt so freaking embarrassed at first because I have already told the public that I have a mental disability and how I use art as a weapon to be seen and heard. At first my family was feeling embarrassed too, they dind’t say it verbally, but I could see them clearly like they really wanted to say "what have you done?", “what will our family say knowing that you are mentally ill.”

Because due to the lack of education, our society still think that mental disability is such a handicap. I think it shaped by how the media commonly talking about people with mental disabilities from negative perspectives.

And after that tv show, I felt Iike I got a slap right on my face by receiving sooooo many messages saying to me if they have same story as I am, and even worse. Like “Hana, thank you so much for speaking up, it really represents how we have to change the narration towards people living with mental health issues”. Until “Hana OMG there are still a lot of people in my village are bound in chains some until their die (I made a documentary film with a UK artist and mental health activist about this phenomenon which still happens in Indonesia commonly known as “Pasung”, and the film it self called In Chains.”

I think that's what makes me stronger to keep going in voicing this issue in various opportunities such as seminars, talk show, until exhibitions. Until finally it has opened my parents' eyes, and has made our communication much more open. We support each others now with all the diffrences that we have and they totally understand and support all my needs and access. That’s why in my case I always say if “ART HAS SAVED MY LIFE”.

I chose doodle art with vibrant colors and expressions because I want people to enjoy the way I speak and deliver about mental health in a bright and positive way. Shifting the society's stigma of people with mental disabilities who are closely related to violence and crime & presenting a different perspective from people with lived experience. (Sorry if it’s too long, haha…)

Shaun:

Ah no worries Hana it’s not too long and even though you feel better with it now can I just say I’m so sorry that all that stuff happened to you. I felt very lost too many times and thoughts of suicide but when I’m reading my poetry my life makes sense and I’m seen in a buzzing strong good way so it’s changed and saved me too. Maybe that’s something in common for us all the pains we’ve felt but ultimately make us better people and artist.

Hana: Including a memory when I went to rehab at a psychiatric ward in Jakarta. It was a frightening experience seing how voiceless we were… Art really has so much power! And I’m so glad we get to know each other. I’m so pleased to be in this group. Shaun, I wish someday I can see your live performance…

Shaun: I’m trying to get better making videos but I wish that too if at all possible one day if I get more videos of good quality I’ll send or post more of those my confidence isn’t great with body image and I had body issues and eating disorder in my early 20s i still don’t like seeing anything with myself on but hopefully my words and how they are delivered uplifting as well as teaches people something. It’s very strange cos all my friends know who I’am and my sense of humour but then there’s like a big separate world of society that doesn’t know many disabilities even exist.

Very glad to have this unique opportunity and that the plus side I think that despite a lot of isolation now a lot of things have started changing for me more gigs more paid performance’s. Things I’ve never really thought possible. All my heroes as a kid were posters of able bodied musicians on my bedroom wall one day it will be more disabled people too.

Hana:

Shaun, thank you for sharing about your story with body image issue & eating disorder. I feel so connected. It’s really hard. I struggle a lot with those 2 things and they don’t want to go away. Being bulimic & laxative abuse for many years really affects me psychally. -Sorry you had to go through that episode in your life… No rush at all, you absolutely can do whatever makes you comfortable with your body. I really appreciate it! X

Shaun:

Thanks I would say in a way like the same feelings of not being accepted in society they help focus my writing but probably triggered the eating disorder too. For me I’m 38 now and it’s better but never fully goes cropping up every so often. I’d like to one day before im really old find a person to share my life with but the perception of disabilities has in some way made that harder but these are also things I write so it’s self therapy with words. I don't know if your artwork is the same but all my poems have stories i can tell first like little introductions then its also like my diary to my life so far.. I take all my memories with me and friends i grew up with when i go on stage.

Hana:

This is my old painting called “Fallen” I used to draw with black and white color during my difficult times both mentally and financially. Which represents how dark and chaotic my self was.



As the time goes by. I found a caregiver which became my partner who fully supports me since 2012. I still struggle a lot with my self now. But what makes everything different is the way I treat my self and others & the way I communicate my psychosis symptoms to my real people. Until I tried to painting colorful and expressive characters that represent joy, interaction, and hopes…

If you notice the shape of my black n white old painting is like teardrops, and now the tear shape has changed into a character I named “Joyfish” (as seen on most of my artworks).

From teardrops, into “Joyfish” (Tears of Joy) Which becomes my iconic character.

“They are Joyfish, expressive creatures that always fly above the surface. In the past they were teardrops (tears), which over time transformed into colorful and expressive Joyfish (tears of joy). Like myself today, who is constantly trying to get up and recover, out of black and white into the colorful world.”

Shaun:

I think these are amazing even the black and white and how your transforming with mental and physical representation. I feel often like this pattern is happening to me getting up to recover with words. Just last Saturday in fact I had an experience that gutted me and I felt like never being open again but my friends were there to stop me doing something drastic and my chance to win and make awareness comes at every next gig or poetry workshop. Feel proud of yourself Hana these are love energy from pain.

It’s also the progression that you show I mean for example I was almost another person completely growing up very quiet I had good family but also really lonely and isolated only in a world of disability schools which try their best but I think don’t fully help you into the real world so I’ve spent my life feeling a bit behind my able bodied mates and trying to catch up if that makes sense .my books from 1 to number 2 show this progress and shift in confidence. I start to believe now that I belong and some people are listening

Hana:

Thanks Shaun. I admire your spirit. We are in the same frequency although with face different barriers & challenges… But this project really gets me excited to meet, collaborate, learn, and explore about other perspectives from disabled folks. It’s so beautiful and again, so powerful. We are definitely in this together and we are working on it to create an inclusive art ecosystem. It’s totally OK some time for all us to take a break, to walk slowly, or run a bit faster. And by hearing your POV it gives me so much strength and power… And I’m so glad you can make it this far!

Shaun:

That’s one of my next questions too probably does food ever inspire your works both of you cos i have a poem in the new book it’s funny about the fact I hate the really stinky types of cheese you know like mould and it smells like peoples feet, so my poem is called cheesy cheese I say I can’t stand cheesy cheese because cos that’s just cheese that got a disease.

Hana:

Hahaha this is interesting. I have nothing about specific food. Except a comic strip that I made about my experience colsuting with internist about my bulimia issue. His harshness and judgment reaction inspired me to make it into dark jokes…

It’s called “Oh God Help Me!”. A comic strip contains 4 episodes with different stories. They are all based on my personal experiences last year when I got some treatments and medical procedures from various specialists including a surgery…

Shaun:

It’s true Hana i mean I’m saying regular to people how I’s it right that the rights for disabilities has only been look at by government maybe once or twice in my lifetime and yet it was introduced in the early 90s about 1994 I think. It’s a big reason able bodied people don’t understand because we can’t get into the buildings to socialise enough so we are a bit like aliens to them

Hana: Yesss that's why I believe that disability is built and systematic. Disability doesn’t refer to us, but to the point where our needs are always considered as an exception.

Shaun:

Yes I’ think that too my newest poem is basically saying that if we cannot tell the difference between physical disabilities and learning disabilities that we are in trouble always going to be missing out cos like I only wanted to know this interesting personality but because I was put together with adult and kids with other issues i missed the chance.

A little line of response from my poem is “I wait an age and age but my flowers would bloom in a concrete cage, success is the sunlight of your softest hands.”

Do you like and could I ask as well like maybe collaborating I see a picture in my mind and I bet you’d be able to draw this I see a disabled man in a wheelchair in a black cage like in a fairy tale or folk tale but beside this concrete dark structure with bars would be a simple pot with flowers climbing up the bars.

It’s like the fear of my possible future of maybe being an old man and missing that soulmate because of the ablest set system but the flowers would show my life bigger than what they can do. I’ll use it all as fuel for poetry and chat but it still hurts a lot.

Hana:

Hang in there, Shaun! That must be tough. Your feelings are valid and yes, something painful can often create something big and powerful. But also remember, that we are here to have fun and celebrate our identity. Sending you lotsa love & strength!

There are so much ideas flying in my mind. Your idea is very relatable to the situation of Mad People who are bound in chains due to their mental disabilities in Indonesia. Let me think about it…

Pelemo:

Your story is one I am proud to hear of Hana! You’re doing an amazing job using your art to change the negative stereotypes and narratives of people with mental disabilities. I am glad you spoke up, I am glad you stayed strong and true to yourself. Oh I’m so so proud of you! Super wonderful to hear your truth and perspective and it’s one I can relate to in a way because I’ve also struggled with anxiety through school because of my disability. We need more awareness on mental health and education for children with special needs. I absolutely love your art and how it makes me see mental health differently. It’s such a wonderful thing, I can only imagine a visual arts and poetry collaboration. We need more representation of people with disabilities in every sphere of life and every sector. Someday your picture would be on someone’s wall, Shaun

Shaun:

What do you like to do when your not doing art is it good to socialise? I’m going to a Beatles tribute band tomorrow night but my favourite band was called the Jam from the 1970s. That’s one thing I do love my country for our music and tv culture is cool

Hana:

One of so many things I love about your country is the music scene. England has produced sooo many amazing musicians and movements.Event though I was born in 90s. But I’m so into with 80s music. Nothing beats that era. New Wave, Punk Rock, Classic Disco, Synthpop, and more. Art and music are in my blood…

Shaun:

I probably wouldn’t be in poetry position now if not for all the music I have a poem in my first little book all about an experience I had on a scooter music weekend when some mates got me on stage and I played bongos for about 10 minutes with the SKA band bad manners it was the song called special brew so the poems save my memories forever

Hana:

Hell Noooo! I loveee Bad Manners so much! I hang out with people which is way much older than me since I was in junior high school. From street artists until musicians from different background of music. But we are all connected. I’m so envyyy!!! You have such a good memory with one of my fav bands.

Shaun:

You seem really cool Hana I don’t have a sister but it seems like we have a lot in common and if you ever come near Wigan I’ll be proud to show you our nice places and Manchester, Liverpool etc.

Hana:

shaun, I’m so glad because you keep doing what you love eventho sometimes it comes from small things that happened in the past. Because I believe art is personal, but can also be universal at the same time…

Hana:

Hi Shaun I hope you are happy with these digital illustrations. The first version that represents your idea. Then came up the second version of it. From my point of view. With a bit rebellious touch. Shaun smashing the wall (barrier).

[caption in both images reads "I’ve waited an age as I age but my flowers would still bloom in a concrete cage"]

Shaun:

They are powerful cool images that’s like what I saw in my head when I wrote that part of the bigger poem.

Hana:

It was pleasure seeing you too Shaun! I’m so happy we already made something together. I’m thinking to create something more which involves Pelemo in one frame. That’s gonna be so powerful. Combining our unique identities together as a celebration of disablity culture…

Also sorry for the delay in replying. I’ve been very busy working on some commercial projects, meanwhile my mental state is currently really bad. I just got another prescribed meds for my depression & delusion.

Shaun:

Ah sorry to hear that Hana I’m always up and down too so I know that way it’s awful but even though we’ve never met I know you’re a lively energy lovely person doing well so just keep going. Always here if you need a chat.

Shaun:

Hey again I was just thinking of something I wanted to ask to do with our project. When you work do you spend a lot of time redrafting and changing your art or not so much. For me I started to redraft my writing a little bit more as I’ve got older but still not a lot to be honest. I usually only tend to maybe change maybe a line or 2 or just the order of the verses. I’m quite lucky because once an idea comes I keep thinking about it first in my head then comes more or less fully formed on paper or typed. I like using instinct than too much swapping and alterations.

Hana:

Hi Shaun! Sorry for being on & off. I’m coping and managing.
-To answer your question about the way I work. (1 of the hardest questions) because it always changes depending on what project I'm working on. For example for my original painting artworks, I always sketch first by using a pencil then block all the parts for many times with acrylic paint to make the color solid and the last one is an outline which I always work on neatly (I use Posca sometimes). That's why many people think my paintings are printed works.

Then when I do murals I usually hire artisans to help me save time, because I'm not very good at spray paint and for huge medium it does make everything efficient.

Then when it comes to collaborative projects, I always start with a process of approaching, listening & of course researching. Like some projects that I did with asylums both in Indonesia and the UK, including a workshop at Bethlem Royal Hospital & Gallery (the oldest asylum in the world) back in 2018, also with an institution called CGL wich focuses on the recovery process of people with drugs & alcohol abused. It led me to a beautiful exchange of ideas and new understandings. That's where the ideas usually come from.

Also another example is my video animation project with an animation artist and writer from St. Helens in 2020. We started it all by writing the script and putting it together into a coherent, interconnected narrative. Then I sent all my characters to her to be turned out into an animation. After that we recorded parts of our narrative into audio. Then I hired an editor (he was my friend in here) to sew the animation visuals, audio, closed captions, and create backsounds that produced into one whole video.

Not to forget, I have a partner who has been my caregiver since 2012 (he works as a freelancer storyboard artist for TVC in here). In recent years he’s been really helpful to help me in terms of time management, communication with clients, documentation, and anything he can do so that I don't feel burnout. I always discuss everything about my ideas and I’m very open about any suggestion.

If I can be honest, I’ve ben receiving so many proposals from some organizations and companies to work with me. It makes me happy knowing if they value me best. But the hardest part which can’t be denied is I don’t have much energy both mentally n psychally. That’s why I always curate with whom I will work with.

And I miss working back in the disability field like what we are doing right now! It gives me so much power by meeting with people who have the same frequency as I am. And the process of listening about people’s journeys and perspectives always open up my horizon to a very wide level.

Shaun:

Okay thanks answering my question and honestly don’t apologise no need I just wanted to see if you’re alright. I hope you don’t feel I’m being pushy I’m just new to this and no had many projects we’re I’ve been paid, it’s just always been gigs and performing alone, aside from 1 or 2 rare occasions. I’m doing another two projects though for myself and working as a collective but that’s been so tricky with people pulling out and making problems at the last minute. So I understand a little bit more now about other pressures but if there’s anyway I can help let me know and tell you need extra time away and space if need be it’s no problem

Hana:

Thank you for checking up on me, Shaun!
I don't feel pressured at all. Ah, I understand collective work. I connect a lot with collectives in Indonesia. It's great if they consist of credible people. But it becomes difficult & can be stuck sometimes if the ego does the talking, especially in financial management & planning…

Shaun:

Yeah it’s weird we are having a meeting on Tuesday with the collective but I really hoped my mates could do it because I wanted to push them through and give them a chance like my poetry mentor always did with me but they’re messing about and mentally and skill wise maybe not up to it so I’ve made a mistake. We will manage it even if reduced in number but they don’t really understand that there’s a lot on this for me as well. I mean it’s still pretty new for me getting paid projects and so those organisations might not hire us next time.

Hana:

Anw, I would like to ask something both for you & Pelemo.
As disabled artists, do you have “Disability Awareness Document”?

I found it really good when I worked with mentally disabled activist from UK. It’s truly something new to me. Because I’ve never found something like that in the disability ecosystem in Indonesia. So, right before we started our fist meeting he sent me a document which clearly describes about his condition, and makes me understand about his access & needs. I thought about making it since 3 years ago but still haven’t made it yet!

Shaun:

Ah to your question the only time I’ve been asked to do an access document was by Denise for this project. Other than that I’d not really heard of it although the only other similar thing maybe is the disability discrimination act but that was made it the early 90s to help disabled people and in my view out of date and needs updating.

I do really like the idea of doing the access document though because it clarifies straight away and disabilities are so wide how could people know everything.

Hana:

Shaun, what about the ecosystem in Wigan? Do you feel it’s safe & accessible for disabled folks (for wheelchair users or in general maybe?)

Shaun:

In Wigan not really great it is changing but so many venues and things I cannot access. For example at the minute there is only one creative venue that i go too but even then it’s not properly accessible and don’t always feel safe or valued it’s changing slowly they keep saying but dependant on funding bids so we’re just waiting but hopefully Wigan looks different in a few more years with extra venues. That’s the other side to why I continue poetry because the more I talk the more we have chances for change.

Pelemo:

Hiya guys! Hana and Shaun!

Hana:

Pelemo, I hope you will get better soon dear. Much love to you from us…

Shaun:

Hi Hana it’s morning here but thanks for that info about the access document and so sorry to hear about pelemo. I’ll read the document properly and give more time but my early though are that i echo your thoughts I want to celebrate my disability it’s not to me a bad thing or necessarily a sad thing just a glad thing. It gives me the unique view and despite the frustration occasionally I wouldn’t change it. I think the access document is one of the keys to understanding situation. In my experience most people are genuinely good in intentions but they are afraid of saying the wrong things or making mistakes so having information written in black and white gets around that uncomfortable place. It’s all about switching the perspective and position. I also think From a practical use the access document is useful to both physical and mental health but probably even more so with mental health because mine is obvious to see that I have it but mental health the opposite almost invisible.

Shaun:

Hi just wanted to update sorry I’ve not been in touch been mentally struggling and down and also recovering from shingles, quite sore but getting better

Hana:

Hi Shaun! Ahhh I just read this. I’m sorry to hear that! Thank you so much for keeping us posted. How are you right now? It’s been full of tears for me in the past few weeks. I was relapse & been psychally really low. I’ve met my doctors to get my new intermittent self catheter as well as new prescribed antipsychotic, antidepressant & anti-anxiety from my psychiatrist (just yesterday). Anw it’s 4 am in the morning right now in here, and I’m gardening.
I hope you are coping & surviving, Shaun. Also Pelemo how are you there?

Hana:

Finally a new painting on canvas finished after 2 years of break!

[text in the image reads 'Mad L!berat!on' and 'no stigma']

Mad Liberation” by Hana Madness
Acrylic on canvas
100cm x 100cm

“For me being Mad is strongly linked to the oppression and abuses that psychiatrically disabled people face, how the mainstream conversation about mental illness excludes our experiences most of the time. For that I believe that exposing the voices of “People with Lived Experience” is a liberating practice (Mad Liberation).

Like the conversation I had with an activist friend from the UK where we agreed that Mad pride & Mad activism is definitely not an act of glorifying mental illness. Because our "madness" is not an option. It's not a lifestyle or fashion that people can decide to try because it's been trending in a while.

I hope that this spirit of activism can enrich the paradigm of mental health that is not only from a medical or professional point of view, but also towards supporting and maintaining good human relations in creating a radical supportive ecosystem, free from oppression & violence (anti-bullying). This will not only provide access to neglected souls, but also potentially facilitate insight into the value, purpose and meaning of life for all of us in achieving the right to be treated with dignity and respect in order to remove all kinds of oppression, harassment, restraint, shackles, and all things that hurt: People with Lived Experience, People With Mental Illnesses, Psychiatric Survivors, Mentally Disabled People, Service Users, Former Patients, and all other forms of identity…

This is a spirit that is built on the values ​​of solidarity, caring & empowerment which are expected to form a strong community & friendship. A kind of alternative society where mainstream society often ignores our existence.

Despite the importance of building professional mental health services that are accessible to everyone. I believe there is an equally important contribution, “Can we maintain a good relationship with each other? Will we open the "door" when we know there are people closest to us who are in need of support? Making ourselves a safe place for them?”

Hana:

Hi Pelemo & Shaun, I’m very open and would be so happy if you want to make something in the form of poetry in response to the visual of my painting. But no rush at all…

As seen on the visual there are breaking chains both on the character hands which represents a lot about something that still happens towards people living with mental disabilities in Indonesia, especially in remote areas. People are bound in chains, being in a cage & shackled for decades and some until their die. I made a documentary film called “In Chains” (2018) with a UK mad artist exposing about this phenomenon in here. That’s so sad and intense.

This is a part of the film when it was shown at Bethlem Gallery (owned by Bethlem Royal Hopspital in London) The oldest asylum in the world. The Chains that are hanging on the wall are the real chains that were used by the former mentally disabled people and we brought them all the way from Indonesia to the UK.

Pelemo:

Hey guys! I’m so sorry I’ve been missing in action. I honestly suck at doing social media, and that’s weird cause I’m from Gen Z haha! But I’ll try harder to be active in this group at least. You guys are doing awesome work btw! And I’m SO proud!

This is so beautiful and I totally would love to write a poem inspired by ‘Mad Liberation’ piece.

As for me, I’ve been drowning in the depths of my anxiety and what feels like a subtle depression. I’ve been extremely unproductive at work and out of touch with reality, just trying to breathe everyday. And to make it worse, I got my heart broken as well. I joke about it a lot though because humor saves the soul.

I’ve been really engaged in the civic space and with my job with the Netherlands Ministry Of Foreign Affairs that I kinda lost touch with my creative side, but I’m trying to gradually get back in touch with my creative side. It’s been difficult but I’m getting there.

Shaun:

Yes and I also do not like the assumption that my life would be better just for being able bodied that doesn’t guarantee anything I could have been an idiot. I think having to slow down and notice gives more uniqueness and the chair adds to it more than it takes. I’d be just another regular poet talking about flowers and sheds otherwise.

Hana:

Yasss!!! You should say it louder, Shaun! It’s similar to my POV on mental health activism. If my mental illnesses are indeed my medical condition, but it doesn’t define the whole I am.

Heyaaa Pelemo… Finally we got you backkk!!! Please please please keep looking after urself. I often feel the same too where I stuck for not being productive for long period. And kept asking my self why I couldn’t be like my other artist friends who keep posting their creative works. Until I manage to understand slowly if our capabilities are made differently and that’s totally OK because we are not competing. (Eventho the feeling still comes up radomly, haha). I’m sure you will get back on your creative side even wilder at the right time, Pelemo.

Shaun:

Hanna is right pelemo don’t worry and I’m often feeling the same if this weird pressure, that’s were social media is terrible absurd and abused cos I’m trying to cut back myself if not for having to promote a few things. It’s no competition art is art and people are just people

Shaun:

Hi Hana I was looking at your “Mad Liberation” painting again today on our reconnecting meeting I think I may have a little poem triggered from your art I can send soon will share here…

“The Madness of My Liberation"

The madness of my liberation
Is how often I can still smile even when I am hurt
And how some may never come to realise we’re growing from the same dirt
Its how as an only child I’d clamber for it to be my brother and sister
Whilst still retaining a neatness in solitude
The madness of my liberation
Is I know I cannot control it
I cannot command it
But yet I cannot help feeling I need to organise it
envying the Octopus with all its cuticles in the sea
A multi tasking messiah we often see as ugly
The madness of my liberation
Is how often I can still smile even when I am hurt
Its forgiving
Its unsaid
Its language left like luggage
On conversations two way street
Blessed in not needing to be staged or noticed
It is relief that it can happen simply in my home
When seeing out of my window
Simple natured patterns
Amongst grazing grass
Or returning to consummated routines like
Charging my chair
Sipping my music and making my coffee

Hi Hana this is poem 1 but i have another small different more direct one soon hope you like it..

My mad liberation I knew was never gonna be a bullet train
But a complicatedly slow draining way to stay sane
Yet I still feel connected in wildly interspersed moments
As if a rainbows riot would flood the whole world
And I’m happy if I could take you with me high upon these shoulders
My mad liberation I knew was never gonna be a bullet train
But I refuse to be a poster boy
To ease an unacknowledged conscious
I refuse to be a poster boy for the pain

Shaun:

Also one final thing i wanted to show you I went to a local community centre near my house last week to teach poetry to young disabled adults or least a few of the techniques cos i wouldn't claim to be a master and we also wondered what liberation for us would mean. I came away and wrote this one too.

“THIS DISABLED SOCIETY”

This disabled society is the only thing disabling me
If it continues to never see
If it always wants to rock me upon its knee
If it gives just to call my bluff
To ease a subconscious guilt and then hope that's enough

This disabled society is the only thing disabling me
if it never even looks at updating outdated policy
I believe there’s a big unheard army but ask how much is it willing to value variety

This disabled society is the only thing disabling me
If it continues to never see
That we are waking up
Waking up
To ourselves and possibility
Only you look the fool for that pat on the head dog besotted rigidity

This disabled society is the only thing disabling me
Because that time is fading
I share in my eyes intrepidly
That we will not be forever twiddling r thumbs
We will not accept and be eternally
Thankful for crumbs

To the Comedians cos we can also laugh
To the Dentists, teachers and doctors
Who are not a broke knock knock joke
Keep smiling keeping aiming
Stay ambitious, stay warm
Because it will happen one day when we know our own worth
And we’ve always had perspective gifts to bring

Shaun Fallows 6.9.22

“A TOAST TO AN IMPROVED SOCIETY”

To the disabled
Doctors
Detectives
Teachers
Poets
Musicians
And
Comedians
Cos yeah we can laugh too
We are not always the broke
Nock nock joke
As futures door will one day bend over its hinges
Cos we rammed it with our wheels
And then spliced it through personalities
Seen invisibility
Stay warm kinder with humility
Know your worth as we know ourselves
Be as you want to be
You decide free
No need to be a poster boy for the pain

Hana:

Oh my gosh! I just had a look to all your poems. So poetic, beautiful and powerful…

Shaun:

Hi Hana and Pelemo just thought id post a video and pictures from a local poetry festival I did at the weekend because believe or not id been having similar insecurity and doubts about staying creative too. I think for me its like panic going from really high moments like festivals and being recently in Edinburgh back to moments when i'm not doing a project or not much at all and except just my normal life I always feel and worry that I've run out of things to be creative for and maybe i'm finished. Its also a very competitive industry so i worry that i'll get left behind and only my able bodied friends will get seen with poetry because access issues mean i can't always be regularly there at most events

Hana:

Thanks for sharing Shaun! You look fab reading your piece. Same here with me. It has so much complexity when talking about creative sense. Sometimes I get so excited to be involved in a big project with a big brand or a company for example. Because I get paid properly (I have my own ratecard btw, based on the Scope of Work I’ll do) but at the same time I feel like I get lost in someway. It’s so strange indeed. And what I do is to inject every project I’m involved in with my activism, like mental health advocacy. And I always curate incoming collaboration proposals. Like how they value my works and my existence. My ideas and perspectives should be heard and applied because I don’t like to be treated like a “tail” who needs to follow 100% what they want.
I mean, If they want me to work with them, we have to get equal benefits.
I’m not always money oriented, of course. Because there were some humanitarian projects I did for ‘free’ just because I felt it’s really important to help others and to get my voices heard.

Shaun:

Yes its a difficult balance like i don't mind talking about my disability at all, its a strength but at the same time, I've noticed recently as I've tried to be more professional i'm annoyed why you only get work under the disability banner, We are always more than this and to have to pigeon hole ourselves a little bit to be seen and heard is mentally difficult.. Thanks by the way I'm glad you thought i looked good i always feel underconfident but cover it with talking, it wasn't my best performance and i ran out of time to do newer funny poems but one old man actually fell asleep when the girl before me was reading so at least that never happened. I caught up with friends too and sold 2 books so again it was nice. I think its a little more tricky for disabilities because able bodied people dominant creative industry so there's a fear that any time you like you could be bypassed and forgotten.

But when i feel anxious i try to remember a great quote by famous Russian writer Leo Tolstoy and it says "if you feel pain you are alive if you feel others pain you are human "

Hana:

Hi Pelemo & Shaun, I’ll be a panelist at World Conference on Creative Economy held by Minister of Tourism and Creative Economy of Indonesia on this Friday. Which will also be attended by Government Representatives, International Organization Representatives, Other International Speakers, Academics, Private Sectors, and Creative Communities.

The theme of my session is “Creative Inclusion towards Equal Pedestal”

Here are the leading questions:

1. What are the challenges for inclusivity in creative economy?

2. How should we approach the significant policies that is inclusive?

3. What are the needs of inclusive policies, while avoiding cultural & creative appropriation?

I already have my own answers. But if you have something in your mind I would be very happy to hear because people living with the condition are the expert.

Shaun:

I had thoughts when i was in Edinburgh because considering most people know Edinburgh for the arts it was non existent here. I was proud that a few people saw my show but very dejected by the gap between able bodied experiences and my own, its 2 different worlds almost. My own theory as to why disability is lagging so far behind were it should be and behind issues such as gender and race is that, the other issues require mainly an attitude shift and not much practical building works or changing etc, but compared that to disability you have to physically alter most infrastructures on top of being able to change mental attitudes.

The biggest thing I think that needs to happen in the UK are disability access is too vague it doesn't hold business and organisations to account it sorted of just says if can do something that try your best. I think the laws from the disability discrimination act 1994 need updating cos they've never been scrutinised. Its another reason we've only seen tiny tiny improvements in my lifetime, if taken more seriously we wouldn't be so far behind.

Hana:

Can you give me examples of the law which need to be improved/updated?

Shaun:

I don't have specific examples but i remember seeing one part of legislation and it said employers must make reasonable adjustments in terms of buildings, and to me this is where the vagueness is because reasonable is different interpretations for everyone for example a company could very well have enough finance to make much better access but all they make do is change one door or maybe a tiny door handle and say they made reasonable efforts, when really they haven't done as much as possible. I understand not every place has the money to do these things but i think for the ones that do, it can't be open to interpretation it should just be done and expected

I think it just annoys me also that business and organisations still have the attitude like they are doing you a nice favour if access is available and this all comes from the fact that nobody seems to know the laws anyway, admittedly i don't know the exact pages from all the laws in place either but id imagine with the times we live in and technologies available it should be common to see access and not the luxury and rarity it still often feels.

Its like my local gym its had of upgrades over the years and I've been training in there about 20 years, but the only adjustments they've made are disabled toilets and lower hand dryers, still only 1 automatic door, you still cannot use all of the machines and have no disabled access to the sauna they had enough money over time from my local council area but say continually they did all reasonable adjustments but to me they did a bare minimum preferring to accommodate the higher percentage of able bodied users.

Id say if you're connected with projects like the Pen Pals or other disability specific projects we are doing then your catered for much better. Maybe if id gone with groups to Edinburgh its very different but sometimes i think we deserve the choice to go as just ourselves why should it take massive amounts of backing , I love chances to do any creativity but When i did my show in Edinburgh they'd never heard of access riders they'd not considered anything other than which able bodied performers were setting up.

Hana:

Thank you for the answer, Shaun! So sad to know there are still a lot of inequality happens all over the places. May I know, have you ever asked to do something for free? Feel free to skip my question if you don’t feel comfortable.

Shaun:

Yeah no worries not uncomfortable to be honest most of the gigs I’ve ever done up until maybe the last two years were always usually free, it was only when I got my two books and applied to disability call outs that anyone even knows what I did. I think that’s also were the massive gaps and contrast is because I was writing poetry since 16 like 22 years and yet it was mostly able bodied friends who got gigs. I don’t mind free gigs but feel more valued sometimes because of the payment

Pelemo:

Hey guys! I hope you’re doing great?

I wanted to ask if it would be okay for me to do a spoken word poem inspired by Hana’s visual art and Shaun’s words? Perhaps just an audio for now. Your conversations are so beautiful and I’m so sorry I’m not so active on social media. You’re both incredibly strong people that I adore

Shaun:

Hi Pelemo yeah definitely do and sorry I’ve not responded for a bit been mentally very wobbly. I think because of lack of awareness and acceptance of disability I’m normally upbeat person but I can’t lie I often feel disappointed, it makes me feel a big failure, I’m trying to change things up but life has never been fair, I’m ok but it feels like my life has no direction.

I know I’ve made mistakes every person does but I think society is largely responsible for the awful way it makes disabled people feel like I’ve always been just a nice person first but society leaves you out of many things and isolates us. It makes disability the issue when actually it’s not our fault not our problem

Shaun:

Hi Hana & Pelemo… I went to a new poetry workshop in a nearby town about 30 minutes away called Bolton I still feel pretty down but did some new work about watching the wheelchair Rugby on TV and the difference between that and arts. I used to play wheelchair rugby although I was never big enough or aggressive enough but to see a lot of my same friends being interviewed on TV and treated non patronising for their contributions it made me feel happy but also really mixed emotions because I thought wow how can the thing I love poetry arts and open mics be left so far behind. I think that's why I feel stuck like a little crisis and sad because I've been doing poetry for a long time and in 20 years for disability it hasn't changed.

I wondered if this would be a prompt for you both I wrote a little poem kind of trying to remind myself to just hang in there and well see what think maybe could draw or write something about what pain would look like as a visual thing. This is a short poem hope you like..

“BOMBS DEPLOY”

I'm convinced the purpose of pain
Even by self and the mind
Bombs deploy
Eventually is to accentuate and recognise the joy

Hana:

Shaun I just made -I don’t know what it’s called, as my response to your short poem.

“When the mania phase comes and the dopamine hormone in my brain increases, that's when my euphoria explodes. When the monsters dance like hallucinations mixed with delusions in my mind that pervades my whole soul. They rejoice and don’t want to be teased. Euphoria is a form of greatness between the darkness of the mind and body. They always come suddenly, playing with the contents of my mind, creating immeasurable joy. I always wait their arrival in the midst of a depression that is so dark and sharp. Maybe tomorrow night or not at all.”

Shaun:

Hey Hana I think I struggle because due to a lot of isolation growing up, every bit of success through writing feels euphoric I think the things able bodied people take for granted I think may never come again so is always too much of an high. The trouble I feel now is I ask myself how do I continue that nice feeling if creative/open mics poetry is so so ableist as to not make access so you can get on the stages or get better gigs. I also feel a little trapped because I’d really hoped to have a partner/ maybe wife, maybe children, something else to take my mind away from when creative areas aren’t accessible unfortunately I think I’m a friend for everyone but so far nobody takes me seriously as a person to share all of life with. I have a few new ideas trying to put together but wonder where and how I move next in a transition period

Hana:

Hi Shaun I fully understand your concern about accessibility and inequality you face due to ableism in our culture, even in developed countries. And I often feel that sometimes our feelings of insecurity or anger arise due to standardization instilled by society such as for example; as a 30 year old woman I should have had children, and often I wonder is this about me living my life and understanding my capacity? Or am I just living for the sake of achieving that standard? That's just one of many examples, and right now I'm in a phase where I'm trying to create happiness from small things like when I'm able to get through the day without pain in my body and mind, then can eat without feeling guilty, then be able to wake up without paranoia. I’m done by putting high expectations on other people.

And I'm proud of you because you exist and you strive to be a part of society in the midst of many obstacles that make you often feel isolated. It’s not an easy task, right? But see, you have survived this far!!!