We gave the KAB (Kent Association for the Blind) a guided tour of the exhibition last week and then did a tour via facebook live for anyone that had been unable to attend the exhibition in person. We had a really great day and wanted to share some images from the KAB event with you as well as the facebook live video for anyone interested in seeing it.
the following text is a written review from Variety.com
Chronic Fatigue Syndrome sufferers get a podium to discuss their still little-understood condition.
A largely mysterious condition that reportedly afflicts as many as 17 million people worldwide, Chronic Fatigue Syndrome still flummoxes most physicians, and remains frequently dismissed as a psychosomatic “illness” — including by some nations. Still, it’s hard to buy the “all in your head” diagnosis when seeing the long-term, sometimes entirely bedridden victims of CFS in “Unrest.” Director Jennifer Brea is one of them herself, and this first-feature documentary chronicles her own struggles while taking in the perspectives of other patients and experts around the globe. Though the “Patient, film thyself” concept is starting to risk overexposure — Sundance alone premieres two such features this year, the other being ALS-themed “It’s Not Dark Yet” — “Unrest” is a high-grade example of the form that’s consistently involving, with content diverse enough to avoid the tunnel-visioned pitfalls of diarist cinema.
Narrating her own tale of drastic, inexplicable loss (medical science still doesn’t know what causes CFS) and necessarily sporadic attempts to fight back, Brea starts out by painting a picture of the person she used to be: an inveterate world traveler, among other things, interested in sampling every culture and experience. Educated at Harvard and Princeton, she found a like-minded soulmate in Kenya-born internet analyst, social-network pioneer and Princeton professor Omar Wasow, whom she married. But three years later, at age 28, after contracting a fever of nearly 105, she began to experience a never-ending panoply of symptoms including extreme exhaustion, numbness, acute pain, uncontrolled movement, and extreme sensitivity to light and noise. Seeing umpteen specialists, she was at first told she must just be physically manifesting a delayed psychological reaction to “some distant trauma” she might not even remember.
But eventually she discovered a whole hidden community of “the missing” — others who had basically lost all normal life functions to the condition some prefer now to term Myalgic Encephalomyelitis, or ME. Among those given a podium here (through both Skype chats and location footage principally from the documentary’s two d.p.’s) are Georgia housewife Leeray, whose husband left her because he thought he was acting as a “crutch” for an imaginary illness. (A decade later, he stopped doubting when one of their daughters also got the illness.) The son of Stanford genetics professor Ron Davis is so diminished that he’s been unable to speak, let alone leave his bed, for more than a year when we meet him.
The most alarming case is that of Danish teen Karina Hansen, whose parents were horrified when police virtually raided their home and forcibly removed her to a state facility — because Denmark is one of the countries that categorizes CFS as a psychiatric condition, and thus considered her a “captive” who was not getting proper treatment. (Incredibly, it took three years of protest before she was released, with no improvement.) The questionable reason that government doctor Per Fink offers for tearing families apart is that viewing CFS as strictly psychological is “more interesting” to him.
As for Brea — she’s first seen unable even to lift herself from the floor, though her condition is variable. She has good periods usually followed by long, hard crashes into pain and dead weariness. Patients are shown to have come up with numerous home-remedy “cures” (most of a dietary nature), most of which have fleeting impact at best. More successful are Brea’s efforts at orchestrating heightened awareness for a syndrome that still attracts considerable public skepticism, and whose medical research is poorly funded as a result. Through it all, she has the unconditional support of husband Wasow, though in darker moments she agonizes that she’s ruined his high-achieving life by handing him a caregiver role he insists he does not resent.
Proceeding at a measured pace — no film about Chronic Fatigue Syndrome should be over-energetic — “Unrest” ably juggles content that’s wide-ranging enough in tone, style and information to prevent the film over-dwelling on Brea’s personal laments. It’s gracefully edited by Kim Roberts and Emiliano Battista, with Bear McCreary contributing an affecting, string-based score.
Sundance Film Review: ‘Unrest’
So, after a lot of hard work the Sick! exhibition is alive and kicking!! The opening night was a raging success, we can’t thank everyone who came enough – what a night! We had about 300 people in the gallery, really taking in the work and discussing what it meant to them which was SO rewarding to see. The paiñata was defiantly smashed to great cheers of delight from the crowd in what felt like some magnificent pagan ritual.
The exhibition has been featured in the press and on the tv and the support we have had from everyone in person and on social media has been overwhelming. So much love and encouragement – THANK YOU ALL
Here are some photos taken by our very own Rikard Österlund for you to enjoy….
In case you missed it here is the BBC news south east feature of sick!
The experience of watching a film in a darkened room surrounded by strangers can certainly be considered a lonely endeavour. Shutting out all extraneous thoughts, feelings and anxieties which may have been percolating over the course of the day leading up to an evening’s retreat in the cocooning sanctuary of the cinema can also be incredibly therapeutic – a visual and aural balm to soothe away the stresses and strains of modern life. Cinema is an escape, regardless of the subject matter thrown up on the screen; it is a haven, a state and mind-altering distraction into an alternate reality, if only for a couple of hours.
Cinema had been widely tipped to have had its day, superseded by the combined might of Netflix, Sky and Amazon Prime in the battle for our viewing attention. Box-set binging is the order of the day now as we gluttonously devour the latest season of whichever TV show happens to be trending on social media – the clarion FOMO call defying us not to engage and consume like all good consumers must, obeying the master-to-servant mantra from on-high.
Television can be consumed in a very sociable setting, with friends and family, all the home comforts and a very convenient pause button, handy for loading up on snacks, or for dropping them off. Cinema can also be sociable though with the gaze fixed on the big screen, joyously distraction and chatter-free. Laughter is communal and emotions are heightened by the shared experience of the screening room. Post-film discussion provides catharsis, greater understanding and fellowship as the lights come back up.
Entirely volunteer-led and non-for-profit, Rochester Picture Palace has been screening films on Rochester High Street for the past four years or so, originally at the Corn Exchange where we adopted the name of a former incumbent a century ago, ‘Rochester Picture Palace’. Now relocated to the Huguenot Museum above the Visitor Centre we have undergone an upgrade with retractable raked seating and a bespoke drop-down screen. Our nationally commended programming largely avoids the mainstream fare served up at the multiplexes but instead focuses on the wealth of alternative and world cinema. We aim to represent all sections of society, screening award-winning films ranging from ‘The Tribe’, a Ukranian movie shot entirely in sign language with no sub-titles, to ‘Tangerine’, a Los Angeles-set transgender feature film shot entirely on iPhones.
Some of the Palace’s most memorable evenings have been collaborative efforts featuring guest speakers, such as the screening of ‘Suffragette’ on International Women’s Day; ‘Mission To Lars’ with the Challenging Behaviour Foundation and our two afternoon screenings to commemorate World Holocaust Day. Medway is such a vibrant area teeming with a diverse array of talented artists and an abundance of fantastic folk who care passionately about the lives of those around them. This, for me, is the defining aspect of society. Local arts and cultural initiatives have been at the forefront of promoting community-based events, raising money for good causes but also awareness of issues which otherwise would garner little or no publicity from the mainstream media.
Rochester Film Society is proud to be involved with ‘Sick! – Living With Invisible Illness’ with the screening of Ken Loach’s Palme d’Or-winning ‘I, Daniel Blake’. The film is a scathing critique of Broken Britain’s humanity-stripping bureaucracy, exposing the humiliation and shame heaped upon disability benefits claimants. The film is also a beacon of hope, however, as it shows how real change can come about by people coming together and helping one another. It is by collaboration and co-operation rather than conflict and division that we can forge ahead and become a society where those without a voice are heard and those in need of help and support are not ignored.
Written by: Gary Barrell, Rochester Film Society
I, Daniel Blake 15 cert, 100 mins (UK)
Dir: Ken Loach
Cast: Dave Johns, Hayley Squires
Tuesday 25 July, The Huguenot Museum, 95, High Street Rochester, ME1 1LX
7.30pm, £6, concs £3.50. https://www.eventbrite.co.uk/e/rochester-picture-palace-i-daniel-blake-tickets-35454148312?ref=wplist
reposted from The Mighty [original article here]
When a person’s illness isn’t easily visible, it can be difficult for outsiders to grasp the challenges he or she faces. “If you look ‘normal,’” they may say, “you can’t really be that sick.” Nothing could be further from the truth.
As the chronic illness community comes together to support Invisible Illness Awareness Week, which began on September 26, we asked our Mighty community what message they want to share to explain the truth about how invisible illness affects their lives and how their friends, families and acquaintances can better support them. By educating the general population, we can hopefully get closer to acceptance and understanding of the realities of invisible illness.
Here’s what they said:
1. “I appear as I want you to see me. I paint on my ‘I’m OK’ face every morning before school and walk around with a smile, but the truth is that I am in chronic pain, always struggling, but you will never see that because I do not want to appear in that light. You may believe I am faking being sick, but I am actually faking being well, and people need to not be as quick to judge.”
2. “Just because I’m young doesn’t mean I’m not disabled. I have had many older men and women yell at me and point to the handicapped sign and then they realize I have handicapped plates. Just because I’m young, doesn’t mean I’m not struggling. I didn’t realize disability had an age limit… someone should really tell my body that.”
3. “I don’t need you to understand what I go through. I just need you to be a compassionate human being like you would to someone who was fighting an illness you could see. Don’t pity, but be decent.”
4. “Just because you’re tired of hearing about us being sick or in pain doesn’t make us any less sick or in pain. I know you can get desensitized to hearing we’re in pain every day, but we don’t get the luxury of being desensitized to the pain. Please be patient with us, and remember we’re struggling and often smiling through pain.”
5. “If I’m out doing something and smiling, I’m running on adrenaline and it will take me several days to a week to recover.”
6. “My illness may be labeled invisible, but if you look closely you can tell when I’m not doing well. I use a wheelchair, I’m more pale, don’t talk as much, etc. so my illness really isn’t that invisible.”
7. “Though I may have the same illness as your aunt, your friend of a friend, whomever, I’m not going to be the same or healed by random internet advice. Please don’t be Doctor Google unless you’re trying to be supportive and educate yourself.”
8. “Just because an illness or condition isn’t widely known doesn’t make it any less serious than any other illness.”
9. “This isn’t who I am. My illness does not define me. So even when I am sick, I will pull myself together. I will have a social life. I am determined to live my life to the fullest, sick and all.”
10. “Chronic illness can be lonely. It is easier to make no plans than to cancel plans, especially when friends and family members may not be able to understand. Please don’t give up on a person because their lives are busy with doctors, treatments, and seeking health.”
11. “Just because I can hang out with you seemingly normally for hours doesn’t mean I’m not in pain inside.”
12. “We don’t want unsolicited advice on how to treat our diseases! We don’t care that someone you ‘know’ has or ‘had’ the same thing. Everyone is different. Please keep opinions to yourselves unless specially asked a question.”
13. “My illnesses may be invisible, but I am not. My illnesses may be invisible, but my voice is not. My illnesses may be invisible, but the dreams I once had, the faith I once had, the person I once was — they are not.”
14. “I push myself well beyond what my illness truly should allow me to. I try to be the best wife, mother, coworker, and friend I can be. I probably disappoint myself way more than I do you.”
15. “I am not going to get better. I think people have a hard time getting that. For them, they get sick and then a few days or maybe a week later they get better. When you are still sick months, years later, people have trouble with that.”
16. “Ask questions before you judge me. I’m happy to share my story and want to educate others. My pain is real so if you don’t understand get to know me.”
17. “Using the sentence ‘I believe you’ will be one of the most empowering things you can say to someone you care about who is struggling.”
Rosemarie Foad a.k.a. Rau is an illustrator who came along to our creative writing and zine making workshops, and has ended up contributing to our publication and showing as part of the exhibition because we love her work and spirit!
how old are you and how long have you been making illustrations?
I’m twenty-four years old; and I’ve been illustrating since I was about fifteen or sixteen, but art-ing for most of my life.
what training have you had or are you self taught?
I’ve done a foundation diploma in art and design, and a bachelor’s degree in illustration; but I’m still learning!
which artists/illustrators influence you most?
The Art Brut movement. I’m enamoured with the naïve visualistic style. These guys have no formal art training, so they’re not hindered by artistic ‘conventions’ or bothered by the ‘right way to do something’. They’re totally free to create art however they want. As Picasso said, “It took me four years to paint like Raphael, but a lifetime to paint like a child.” Ergo, I’m trying to free up my artwork to become more fluid, raw and expressive.
why do you make art?
Two reasons. Firstly, there’s the ‘Bread Art’, art that isn’t for me, that brings in the pennies so I can buy tobacco and bread. Second there’s the artwork that I’m just driven to create, where I am art, and art is me. It’s so natural and intuitive that I can’t help but create. It’s a healthy coping mechanism, and a release of pent up thoughts and ideas.
do you work mostly to commission or just make your own stuff?
I’m not too sure yet if I want to work in the freelance business. I think that would be too restricting. I’d rather just create to feel good.
what is your work about?
Really, I have no idea! It’s a bit of a mess, like me, with no set direction or path. Usually just whatever’s in my head.
what made you first take your art seriously?
I think I went through a period of about five minutes at university where I took my art seriously. Mostly I try and keep the art-vibe free and loose.
One of my tutors suggested I do it as a degree; so I did a foundation course to try it out and see if it was for me and it seemed to suit. I like the combination of word and picture. I am a writer and storyteller as well, so illustration is the perfect amalgamation of the two.
which mediums or materials do you like best?
Anything. Literally. I’m veering towards more organic materials for the Bread Art at the moment, making my own paintbrushes and pigments out of found sticks and chunks of clay or mud. But for illustration I have to say that I am particularly fond of printmaking; I am very tactile so textures and printing appeal to me. I like to make stamps from foam or erasers, and small linocuts and monoprints too. I’d like to be able to work in riso and screenprint more than I have though.
have you exhibited your work? if so where and with who?
I’ve had the standard ‘final shows’ during the foundation course and university; but I’ve also had the opportunity to exhibit in the Bishop of Rochester’s garden, which was fun. I’ve also attended Leeds Comics and Arts Festival: Thought Bubble, and had a couple of zines on sale there.
do you make your work for an audience?
Mostly I make whatever I want to make. With the Bread Art it’s difficult to wrap my head around making art that isn’t for me. But with a lot of my works my target audience tends to be people already imbedded in some way or another with the art-world; or creative people with mental health problems.
if so what do you want them to get from it?
I would like people to draw whatever conclusions they may, and to talk about it. I want people to be connected with my work, not just see it in a gallery and then move on. That’s why I like tactile mediums like print and 3D work as it gives a chance for greater and more immersive interaction.
why do you make zines?
They’re fun as heck! I enjoy book-binding in itself. But you can’t beat collecting old postcards, beermats, old tobacco tins, scraps of paper or signage and shoving it all together and drawing all over it. Also, photocopied zines are awesome, there’s something so simplistic and real about running off a few dozen copies of your zine on a beat-up copy machine in the back of a newsagents or library.
do you collect other peoples art? if so who?
I would hesitate to say ‘collect’ but I certainly hoard a whole load of visual paraphernalia. I can’t walk into a store or museum without rummaging in their free leaflet collection and picking out all the cool-looking ones. I tend to pick up lots of random shit like train stubs and bits of old posters that have fallen off a lamppost too; anything visually interesting. With regards to particular artists, I’ve got a whole world of books and the internet for that.
describe your studio practice, rituals, routines etc.
I’m afraid I haven’t got much of a set studio practice as mental health tends to intervene at sporadic intervals. I begin the day by rolling a cigarette and making a coffee and going to sit in the backyard to suss out the day; once I’ve worked out where my mood is, I try to get inspired. I can’t really focus for very long so I have to use the ‘pomodoro’ technique otherwise I’d never get anything done. There’s not much routine, if any. I’m consistently inconsistent.
is art important? if so why?
Very much so, I wouldn’t exist without it. Art is everywhere, in everyone and everything. I believe it’s as important for your emotional and mental wellbeing to be creative as it is to get regular exercise.
To see more work go to Rosemarie’s website: http://rauillustration.co.uk/
Like many artists I admire Emma Gates is dyslexic, and as she explained to me that means she struggles to express herself successfully using the written word. However, she is able to use visual art, in particular photography to explore narratives and tell stories, as well as documenting her life.
Emma studied for her photography degree at UCA as the world left the 20th century behind from 1999-2002 and then returned ten years later to do her masters. One ongoing conversation that Emma recalls from this period in education was about being a photographer versus being an artist that uses photography – a distinction that she feels is unnecessary. As she told me “I don’t think there is a difference really, just in other people’s perceptions of what you do. I hate the question what kind of photography do you do? So to be an artist gives permission to make without boundaries.”
As I’ve found with many artists, including myself, Emma prefers making projects of her own volition and avoids doing commissions, as she finds the process of working to someone else’s agenda creatively stifling. “I have a compulsion to record and document things that happen to me and things that interest me.” Gates’ work is intimately personal and derives its power from this, two of the projects that struck me most were about the death of her mother and the birth of her first son, which it turns out happened during the same academic year of her MA.
Emma is showing as part of MEDWAY OPEN STUDIOS 2017
The Shed, The Tack Room, Hulkes Lane, Rochester, ME1 1EE
Map No. 17 / Wheelchair accessible? No
Although initially this body of work appears to be about men and their opinions, it becomes apparant that the work is about the control, risk and vulnerability of the lone female photographer. All explored against a backdrop of unexpected trust that is formed between artist and models.
Sat 15: 10am – 5pm, Sun 16: 10am – 5pm, Thurs 20: 12pm – 8pm, Fri 21: 10am – 5pm, Sat 22: 10am – 5pm, Sun 23: 10am – 5pm
firstname.lastname@example.org / 07944 699 723 /
Ensuring a Smooth Journey: A Guide to Brisbane Airport for people living with Dementia and their Travel Companions is a step-by-step guide of the airport. It identifies the international dementia friendly symbols and takes users through the different airport zones.
The guide also outlines what to expect in the bag screening area, duty free regulations, customs, quarantine, transfers and immigration, and includes advice from people who have dementia and those who travel with them.
The Queensland University Technology-based Dementia Centre for Research Collaboration: Carers and Consumers (DCRC-CC), who developed the guide has been working with the airport since 2015 to improve the experience of air travel for people with dementia.
“Close to 47 million people worldwide live with dementia, including more than 413,000 Australians, but many still travel. Until now, no guidelines for dealing with such passengers existed for airlines, airports or carers,” says Professor Beattie, Director of the DCRC-CC, adding a previous DCRC-CC study found the most challenging part of air travel for people with dementia was managing at the airport.
Suggestions in the guide include visiting the airport beforehand to become familiar with the layout. “It can also be helpful to do a trial run with a short trips,” says Prof Beattie. “Another good idea is to plan flexible stopovers to allow gradual adjustment to different time zones. Even the choice of seating can be helpful.”
Julieanne Alroe, Brisbane Airport Corporation (BAC) CEO and Managing Director, says the resources kit would complement Brisbane Airport’s existing Disability Access program and be integrated into customer service training for airline staff and other airport workers, including retailers, security, cleaners and volunteers.
Professor Beattie also hopes the guide and staff training material can be adapted for use in other airports in Australia and worldwide, and in other formats, such as a mobile phone app.
A step-by-step guide takes users through the different zones of the airport (Source Brisbane Airport)
Alzheimer’s Australia CEO Maree McCabe says the Australian-first is a major step forward in making Australia more dementia-friendly. “Australia’s first dementia-friendly airport is a fantastic achievement and Alzheimer’s Australia congratulates everyone who has worked to see it become a reality,” she says.
“People living with a diagnosis of dementia can still enjoy travel, and may require some extra assistance to do so. This guide is fantastic in enabling people living with dementia and their carers to continue to do the things they enjoy, like travel, while assisting in navigating the airport, preparing and planning for travel.”
Ms McCabe points out no matter the size of the organisation, dementia-friendly principles could be achieved.
“Dementia-friendly may include changes to design, layout, signage and way finding or education of staff to be able to recognise and better assist a person living with dementia,” she says. “We expect this is just the beginning and look forward to working with many more organisations, large and small, to think about how they can become more dementia-friendly.”
The guide can be accessed online at the Dementia Centre for Research Collaboration as well as Brisbane Airport Corporation.
[original article: https://www.agedcareguide.com.au/…airport]
The number of students dropping out from degree courses due to mental illness has increased significantly in recent years. Illustrator and student Ella Baron captures the experiences of 11 undergraduates