Applied Imagination Journey – Page 3

How can the work of caregivers be highlighted through creative activism?

Here’s the thing. Up until now I had been focusing on cancer patients and mostly because I experience what is like to live with one on a daily basis. I am aware it is though and it’s a hard reality to process, however, the diagnosis did not affect just my mother but also everyone in the household and most especially those who focus on giving her care, my dad and I.

This led me to the conflict of evaluating whether I should be focusing on patients or caregivers or both.

To start with, the doubts emerged in my head a couple of weeks ago, when I joined several Facebook groups of different cancer patients, they would get to vent and share their stories, send each other support links and different platforms where they could access information. One of the groups was only for friends and family members of cancer patients, the conversation there, while different was also quite similar.

Some people felt exhausted, anxious, fearful, guilty and all in secret. Most of those who identified themselves as the carer of the cancer patients highlighted that they had to stay extra strong for the both of them, extra positive, had to try to look after themselves and the patient. Their mental health wasn’t at all great and there was a partial guiltiness to this because “they aren’t the ones diagnosed” and they “aren’t the ones going through it”, only that they actually are going through the journey as well.

I used to always tell my mum when I was little that I’d rather die before her because I’d never ever want to go through the pain of seeing her go. Weirdly, as aware as I am today that it might sound extreme and anti-natural with the cycle of life, I still stand by saying that the thought of losing her is unbearable. And therefore, I’d much rather be the one getting sick than be the one seeing the person I love the most in the world go through it. It’s a very strange messed-up feeling, but thankfully, it seemed like I wasn’t the only one feeling that way. Many people in the group related and would share their own mental health stories about how they have been dealing with this whole change, secretly.

So, through my research on mental health and cancer patients, I did realise one very clear thing, there was a lot. A lot of information, a lot of research done trying to improve, observe and evaluate the factors of poor mental health in some patients and how to support it. However, the literature found for mental health, support in caregivers is a very reduced number. The few papers that do talk about however, do mention the increased levels of anxiety and depression in caregivers due to the responsibility and the emotional conflict they undertake.

And all of these thoughts lead me to my tutorial, yesterday 28th of June of 2021.

So what happened during my tutorial?

I updated my tutor on some of my findings, some of my thoughts and most importantly the direction I was feeling inclined to.

I started by explaining that my question is due to change but was not going to change until I had processed the direction I truly want to take. Also, after I have done a photoshoot with a cancer patient and her caregiver.

After this, I was suggested that I should have someone record or photograph the behind-the-scenes of the photoshoot, especially if my mum will also be present during the shoot, this would not only be used as evidence of my interventions but also as an emotional archive.

Furthermore, I expressed my concerns about my focus, about whether it is caregivers or patients and whether having such a specific narrow point on cancer made things not just more limited but also less interesting – and I say less interesting because there is beauty in the diversity of stories that can be told and found.

Through engaging in a very thought-provoking discussion, David managed me to do that he does best, lead me to answer my own question, quite naturally. And so I did, I then expressed I’d like to focus solemnly on caregivers, their labour and bring spotlight to the different faces and narratives these unseen heroes have to say. Some of the words that were highlighted through conversation where: legacy, historial archive, resource.

Moreover, I had made it clear that two of the creative mediums I wanted to focus on exploring were narrative and photography and they are the one dearest to me but also the mediums I want to be known for as I keep developing professionally. This masters is about taking calculated risks and being authentic to oneself and I am done running away from my interests for the fear of not being good enough at them – I will only be good at them and make them my own practise by being perseverant and believing in my skill and power to tell stories, not just this but it’s a good way to finally put myself out there and do a project for the benefit of others through my own work.

So finally, in short

My intervention will be

A book, containing the narratives of contemporary caregivers along with their photograph

I will measure how, all the different stories and faces that lay behind those in need of care, can be recognised and celebrated as seen heroes that through their kindness and dedication, make a difference in a person’s life day by day

How can creative experiences improve the way cancer patients and caregivers cope with their journey?

What

This research focuses on examining ways in which creativity and artistic disciplines can support the mental health of ill patients. We look into turning an artistic discipline into a force for good, a humanistic tool for supporting those who might need it. In this study, I choose to focus on cancer patients and their caregivers as receivers of a creative service as a way to feel better. The aim is to measure whether the levels of hopefulness and self-esteem increase in comparison to before the interventions proposed.

I propose that the engagement with an artistic discipline such as photography, as a service, can have positive effects on the patient’s health if done appropriately and with a carefully developed ethical methodology and risk assessment.

I also observe that up until now, cross-disciplines such as art-therapy in cancer, though still a not fully explored practise within cancer patients and hospitals, have been used as tools for self-exploration and distraction. According to some studies, cancer patients who underwent chemotherapy and then did art-therapy for an hour seemed to have improved levels of anxiety and depression. Here, I takeaway the importance of distraction, engagement and experience as elements to be considered for this study; however, I aim to utilise the experience in a less of a therapeutic paradigm and more as an experience that can boost the patient’s sense of self as well as those around them, forging a stronger connection during such difficult times.

I am interested in exploring inner and outer beauty, human connection, humanisation of the arts beyond trend activism, and exploring alternative ways of creating awareness of this illness.

My role in this project is as a project manager, humanist and creative practitioner. Ideally, I’d like to collaborate with other artists who are willing to participate and turn their art work away from themselves and on to creating a positive impact in a reality that we cannot run away from, cancer.

Why

A life threatening illness such as cancer can change a patient’s life in a second. According to cancer research UK, in females, there were around 77,800 cancer deaths and in males there were around 89,000 cancer deaths in 2018. Based on their data, every four minutes someone in the UK dies from cancer. Furthermore, 1 in 2 people in the UK born after 1960 will be diagnosed with some form of cancer during their lifetime. This is alarming, it also means we cannot escape or turn a blind eye to it. We must create awareness, we must invest in research through all the possible ways, we must find new ways in which cancer is talked about, in which we support others and in which we can learn to support ourselves. I believe new initiatives need to be brought to the table, new cross-disciplinary research must be introduced, this matter because it affects us all in one way or another.

According to a cancer study done by the Mental Health Foundation UK, 49% of people interviewed by the charity said they received no support or advice from health services about managing their mental health through cancer, while 66% said they were not informed at all about potential mental health problems that could arise at the end of treatment.

This is relevant not just for cancer patients but for their families and designated caregivers. There are reports that state levels of depression on family member’s of cancer patients because of the uncertainty, the fear and the process of seeing a loved one go through so much hardship, not to mention the economic stress depending on economic stability and or geographic location.

This is an urgent matter, it’s urgent because it’s present and while there is much support available, there can always be more.

How

At the moment, the application of different interventions will be a way to understand more about how cancer patients can be supported through creative experiences.

Some of the interventions that have been thought through, these can vary but will only be analysed after their application.

Intervention 1: A Photoshoot to Remember / preserving memory

Small step: Photoshoot with eligible and willing cancer patients and their families or loved ones.

Big step: An artist’s non-profit organisation supporting cancer patients and their families through empowering, fun and meaningful photoshoots. The shoots would be in collaboration with stylists and make-up artists depending on the patient’s choice. Photographers, stylists and MUA’s come together to celebrate the lives of the patient’s and the role of their caregiver through a creative experience. The patient receives a copy of the photos along with a printed version of their favorite one.

Ideally, the photos could be taken to an exhibition to appreciate the strength of these patients and loved ones and raise awareness at all the ways in which cancer can be showcased.

Intervention 2: Cards to Open Up

Small step: Curate questions with the help of a qualified psychologist to promote conversation between a cancer patient and their loved ones, facilitating conversation and allowing for the patient to feel listened to and for the loved ones to understand the complexity of the journey.

Big Step: Create a deck of cards with the defined questions and design, ship and bring to cancer charities with the opportunity of them being given as a resource for conversation at home.

What if

What if the interventions actually worked? What if they could make the slightest difference and raise awareness? What if we could take the pictures to an exhibition or museum and showcase the beauty of those struggling to appreciate their journey and fight and celebrate their resilience? What if we could find a way in which creative experiences tailored to specific illnesses could improve their sense of self and their hopefulness levels? What if a road to easier communication could be created with the simplicity of cards? Or what if, through the failure of this interventions and this proposal, we are able to discover new and more accurate ways in which to support patients and caregivers enduring this journey?

Sources:

Cancer Research UK

Mental Health Foundation UK

MacMillan UK

Being in a cancer group for a week – observation

After much research done I’ve come to understand different aspects of the pain of being a patient who’s scared and uncertain about their future. Not just that about also a patient dealing with change, a withdrawal of a life they knew and the hard process of trying to accept their new reality.

Through being in a Facebook group for cancer patients and their caregivers I have been able to read their stories, sufferings, thoughts, what helps them and what doesn’t. I have seen a mix of hopefulness and hopelessness.

Some observations:

Most people seem to prefer tv shows more than watching movies for distraction. This is due to the length of what they’re watching and the effects of “the chemo brain”. Episodes are shorter and it helps with the shorter attention Spans and memory due to treatments.

Most people seem to find journaling and sharing their own story very helpful. They seem to seek comfort in others thoughts, empathy and prayers. In one of the Facebook groups I am in there are 41.2K members, in another 2k. This is a sign that patients and family members want and need community support through stories during such hard times. Most posts repeat the following words: fear, anger, anxiety, gratefulness, unfairness and change.

Breakdown of interventions:

Card deck with prompting questions to get to be able to discuss and open up with family members, caregivers, create a stronger connection through a hardship.
SunnySide* Film/hospital touring festival & platform; a platform of feel-good curated short films (no longer than 30 minutes) by fresh talent across the UK*/Spain (to decide). Ideally, they’d be screened in hospitals, either in the rooms for those who cannot go anywhere or as an event when possible. Otherwise, the option of making it solely a platform with whom patients in hospitals can access to with a password; there, they could have an option to journal based on the shorts they’ve seen. This would be curated by the help of psychologists.
A non-profit filmmaking organisation focusing on producing short stories written by cancer patients with the hope of offering a way to express themselves and seeing their own creation come alive with the help of young and socially conscious filmmakers and volunteers.* (partnering up with film schools, colleges, acting courses, hospitals); turning short stories into realities. (the money raised from screenings would go into cancer research)* (funding is important – how do we select the stories?) stakeholders: cancer patients, hospitals, family members
Inspirational platform of talks from cancer patients for cancer patients

I argue that a creative outlet that involves storytelling, communication and awareness could make an impact in cancer patient’s mental health. Whether that is by introducing a new project to be part of, seeing or achieving something they had not thought about before, unlocking their creative side, or by prompting them to communicate with their circle. Therefore, finding an intervention that can combine those elements and can remain an offline-online option to maintain inclusivity and broaden opportunities is essential.

The evolution of my question after a week multiple cancer Facebook groups:

[initial] How can creative entertainment improve the quality of life of hospitalised patients?

How to improve the effects of cancer treatment on mental health through creativity?

How can creative entertainment support the mental health of oncologic patients?

How can creativity improve the mental health of patients with cancer?

[Current] How can storytelling support the mental health of cancer patients?

key words: community, mental health, stories

Motivational Media

About Change

In december 2020, my mum was diagnosed with stage four cancer. A very rare one in which chances of surgery are nule. My life changed radically. I left the job I loved, in creative education, I left the guy I loved, and the city I loved, to go and be with the person I love the most in the world, my mum. It was an easy decision during a very difficult time.

What’s funny is that during one of the most unstable years of my life, towards the end of it, it was all looking a bit more stable. I was about to rent a flat, near where my university was going to be. I was going to embrace living with my partner and enjoy every minute of it.

But life works in very interesting ways and once again, everything changed. So, fast forwarding to January, my mind racing about the idea of starting a full time masters, online, feeling alienated from the world I knew (in London), alone in a city I am meant to call home, looking after my mum was not at all how I had expected my 2021 to be like.

I have learned the importance of love, and most importantly of embracing the beauty in the little things, the little moments. My life has been a constant cycle of never-ending changes, and adapting to change has been a skill I have long learned.

Change in my life started at the age of 1, when I left my cozy home in the city of Lleida to move to the seaside life in Huanchaco, Peru – there, I was raised for over 10 years. Then, my family and I moved to New York, and then to Pennsylvania. When change is constant, you either ride with it or let it consume you. It was hard, inevitably, but it did prepare me for what the future had in store for me.

I now find myself sitting down in my auntie’s flat in Lleida. I am experiencing high levels of stress for this project’s research. Why? Because with such big events going on in my life, with so many problems going on – I wonder, how do I cover it all? How do I make big improvements happen? How do I help my mum and those going to hospitals feel better? How, how, how… and how do I find a common ground between my interests without heading into a deep health-related investigation that would mostly fall into a scientific spectrum.

I have been thinking and thinking and doing a lot of inward reflection, which I then have been advised to stop doing. And I have listened, and I have embraced that process of looking at things from a less emotional point and started looking at things from a much more analytical one. What is the biggest “inciting” element of emotional distress within hospital patients and family members? CHANGE. C H A N G E. \

“Duh” you might think, but it’s not as obvious. We have been wired to achieve stability, we have been taught to try to make life as static as possible, or maybe not all but I have. We aim to be stable, to have security, to be predictable and to know that we will hold a future. So when we are told we’re ill, or that the person we love is ill, our life changes. We might not notice right away, but the alarm bells, the anxiety, the fear, it all is evoked from the deep and engraved alert that change is coming our way. Most times, we relate change to an extremely negative path – completely understandable if your life, loved ones, future, home, money are at stake. But when change is unavoidable, how do we embrace it?

As someone who has been living with a person with stage four cancer for the past six months, I can say I have observed deeply how much change my mother has been going through. And of course, how much change each of my family member’s have been going through. But here’s the thing, we all go through it in different ways, however some choose to ignore the transition they’re experiencing while some decide to embrace it. I have been placed in both spectrums. My mum has been hit hard by the change of her life. She knows cancer sucks, she understands it’s irreparable and that there is no going back however, she struggles with the idea that her life is different.

And I’m not sure if it’s because we’ve been so impregnated with the idea that being different is bad. She knows that for now she cannot work, for now, she gets tired on walks, for now, she’s losing her hair, for now, she’s feeling nauseous, for now, she’s emotionally drained, for now, she doesn’t want to socialise. We link the positive embracement of change with over-the-top hollywood movies about a cancer patient that decides to complete their bucket list and live happily shortly after. We mock the idea that that is possible or we even assume that this way of thinking could only possibly happen in movies. That it’s an absurdity – but what if it isn’t?

My mum has made it clear several times that she has accepted her diagnosis, “that’s life” she says, however she can’t fully embrace the change, in a way in which she re-adapts her old version of herself, her old life, and makes a new life out of the new person she’s inevitably becoming. And in all honesty, I haven’t fully either – I have felt stuck in different levels of my life, not understanding how to move forward without looking back; wanting to be two different versions of something I no longer am. Life has changed. I have changed. It sucks. We have to adapt.

And we either become hopeful change optimists or we become bitter and anxious.

In a time where so much has changed, where the world has changed, I hear comments like “Can’t wait to “go back to normal” – what’s normal? The old? Can’t we move on and adapt to something new, the normal is the present. Why don’t we embrace the goodness that has come out of it to then move on and be ready for future global changes? It is only that way that we can truly potentiate our minds, in a healthier wired way of thinking – and therefore, being slightly less worried about looking back and more excited about what’s to embrace.

Introspection and Worries

After my tutorial on the 24th of May, several interesting questions arose. Some which I had already thought about and many that I yet haven’t come across. Listening to my tutor’s perspective on my project helped me gain new insight into what I was doing, and together we shared a discussion about the possibilities and directions in which this project can go.

What is my infrastructure? What will my interventions be? Who will I focus on? What are my categories and what will be my role in my own project? What are my intentions with this project and research? What to do when doubt kicks in? Where do I focus my research? What am I trying to achieve?

*Myself, The Sun* is a visual representation of myself and what I radiate – I created it as a way to understand the elements that surround me all the time and to remember to explore throughout my project

We also discussed the issue with self-doubt and blockage; usually a constant in research and creative practises. For example, what happens when you start doubting your research question? what are the key elements to keep in mind when insecurities start creeping in? and then from my discussion with my tutor he mentioned something extremely relevant (in regards to impostor syndrome and insecurities):

“There is always a reason to add; to have something else”.
David Mills

The above resonated with me because as an early-stage researcher, it is incredibly easy to start questioning your authority and agency in leading research from cross-disciplinary field, it is easy to start questioning your own experience and allow fear of the ordinary to creep in. Now, what I mean with fear of the ordinary is that we, through our research, do not end up accomplishing anything extraordinary – that it does not end up going anywhere nor contributing to a cause. That in itself is scary. It’s a conflicting feeling between auto-dissapointment and disappointing others.

For this discussion, I developed a visual map of my skills, fears, passions and interest to keep in mind throughout my research. Tools to look back and compare but also to move forward and identify where the my weaknesses and strengths and how to potentiate them.

Another visual representing my cycle of doubt for my own analysis and understanding

Visual representing summary of goal of research

My next steps are to identify what will my infrastructure be; at the moment due to covid doing on-site hospital experiences feels a bit out of reach, however building a strong relationship with hospitals will be able to provide that bridge for later on. Currently, the key is to focus on understanding what do patients need, what do hospitals need and what doctors see as the important aspects of improvement of quality of life. I then need to decide whether to focus on hospitalised patients, patients that have a long term treatment (are constantly going to the hospital) but are not hospitalised, and or paediatric patients (complete different audience from adults needs).

When thinking of infrastructure, it was discussed that a media platform could be a solid starting point if we were to understand the content that would be showed. I then need to decide and clarify whether I’d want to focus on patient-centred hospital media, yet this still feels individualised, or focus on a more community-experience-centred approach.

My next steps are to organise direct data collection systems and interviews with different doctors to understand the needs; once I understand the ethical procedures of data, I’d focus on gathering the direct data from patients.

As an overall summary, the next steps is to gather direct information (primary research data) from an established hospital institutions and its primary figures as well as formulate a clear intervention plan to move forward. Also, focus on what direction will this research project go and how will I use it as a foundation of the direction I’d like to go.

next steps of research healthcare & creative experiences –> creative care*?

How can creative experiences improve the quality of life of hospitalised patients?

Project six

The purpose of this study is to explore the potential of creative experiences as a medium to improve the quality of life and hospitalisation.

KEY WORDS : QOL (Quality of Life) – LOS (Length of stay), experiences, creativity, hospitalisation

QUALITY OF LIFE: General quality of life encom- passes all aspects of life, includ- ing health, recreation, culture, rights, values, beliefs, aspirations, and the conditions that support a life containing these elements.

The subject area that I will be exploring is a cross disciplinary one; it combines healthcare (hospitalisation of patients), mental health/quality of life and creative entertainment experiences. The precise question I will be addressing is the following: How can creativity improve the quality of life of hospitalised patients? I have opted to leave the question as a general one as there are many angles in which to approach creativity, experience and the improvement of wellbeing.

I am yet to define which area of hospitalisation I will be focusing on as a way to start. As area I refer to oncology (which is most likely the area I will focus on), pediatric care and so on. It is early to define which type of creative practise or approach will be used to explore the impact in patients however, it will be through several interventions through different artistic experiences that this will naturally take its own path.

WHY: Why will this research be of value to you – and the world?

This research will be of value because being hospitalised long term is already a difficult experience as it is, and in many cases, the patient can feel removed from normality and almost from society, as if everything going on is in the exterior. Patients spend hours and hours in hospitals and while not everyone might be in the conditions to attend to activities, there are still a number of hospitalisations that could be made more pleasant. Hospitalised patients may be at risk of experiencing a sense of fear and anxiety and this is why it is important not to completely remove them from the world that they were living before they had to be hospitalised.

Not only this but it is a stage in which many of us will experience at some point in our lives, whether that is while being young or old; and not just ourselves but close friends or family members. There are hospitals who already cater to their patients’ needs, however many of these are high-end private hospitals that many cannot afford.

Understanding an applicable model of creative entertainment for hospitalised patients could be a way to help them improve their motivation, sense of normality and give them and their family members a way of spending time together as breaks from the common dynamic of hospital bed and room.

Again, while some countries and hospitals are already focusing on ways in which they can help their patients’ mental health positively, there are still many hospitals, places of care and countries that do not; and regardless of their age, race, condition and state they should be helped throughout a time in which the most precious element, their health, is at stake.

HOW: How will you accomplish your project in practical terms? What will be your methodology, management strategy, and schedule?

First of all I will be looking at different existing and past models of care; various theories such as Jean Watson’s Theory of Human Caring, Margat Naumberg’s Art Therapy practise and those existing to mental health, elderly care home model’s of entertainment and look into practises within different countries and hospitals, cruise ships model of entertainment and so on. It is crucial to understand what exists, what has worked, what hasn’t, what has been accepted and what not and the reasons for this.

While doing this theoretical research, I will interview different health care professionals and hospitalised patients to understand their current state at hospitals and if they believe introducing any sort of entertainment experience that can spark human connection could be of positive impact.

I will proceed with several local organisations from different artistic disciplines to curate a programme that could be spread throughout two months and introduce such to both patients and professionals; a prior approval or feedback from psychotherapists, health care workers and managers will be absolutely necessary.

Some of the organisations that I am considering partnering with will range of disciplines; from theatre, puppetry, fine art, photography, comedy, cinema and so on.

At the minute, the one thing against this project besides fundings is the current pandemic as it would be delicate to let people into the hospital unless necessary. If the situation has not improved by the time needed, the interventions will have to change or will be adapted to being screened online or be directed to be done by the patients themselves.

Furthermore, this is a project that has both the potential to grow into a curatorial programme specialised in creating experiences for hospitals or it could show that in this field, creativity might not be the immediate remedy to hopelessness or anxiety; however, what is crucial is to test and find out, and redirect if needed.

I am yet to decide whether this is a project that will be focused solely in Catalonia or if will be done in London, at the minute however, London is doing much more progressive approaches in the field than catalonia and because of that it might be of more impact in to do it where it is most needed.

On the other hand, the lack of cultural appreciation in the arts and the lack of fundings could be an obstacle to even get through the first doors with such progressive idea and approach; in which case if this were to be a constant impediment to be able to carry on my interventions then I will move on to doing it in the UK, whether that is in London or somewhere where hospitalisations are naturally high and there is a need for this sort of project. Decentralisation is one of my main interests as well so this would be an interesting way of application as well.

Reading sources:

U.S. Department of Health and Human Services. (2000). Healthy people 2010: A systematic approach to health improve- ment. Retrieved May 30, 2007

A Prospective Descriptive Study Exploring Hope, Spiritual Well- Being, and Quality of Life inHospitalized Patients

Jean Watson’s Theory of Human Caring (Watson, 1999)

Creativity and Spirituality in Nursing, Implementing Art in Healing Mary Rockwood Lane, PhD, RN

Cancer, emotions, and cinema: a preliminary study about the changes experienced by oncological patients L. Sarno1, M.M. Ratti2, E. Soldi1, A. Derevianko3, C. Verusio

Ana Filipa Correia, Sofia Barbosa, Cinema, aesthetics and narrative: Cinema as therapy in substance use disorders,The Arts in Psychotherapy,Volume 60,2018

Shannon B. Dermer & Jennifer B. Hutchings (2000) Utilizing Movies in Family Therapy: Applications for Individuals, Couples, and Families, The American Journal of Family Therapy, 28:2, 163-180, DOI: 10.1080/019261800261734

https://www.medicinema.org.uk/what-we-do

Carla Gramaglia, Giovanni Abbate-Daga, Federico Amianto, Annalisa Brustolin, Stefania Campisi, Carlotta De-Bacco, Secondo Fassino, Cinematherapy in the day hospital treatment of patients with eating disorders. Case study and clinical considerations,The Arts in Psychotherapy.

Kristine Theurer, W. Ben Mortenson, Robyn Stone, Melinda Suto, Virpi Timonen, Julia Rozanova, The need for a social revolution in residential care,Journal of Aging Studies, Volume 35, 2015,Pages 201-210

CREATIVE-ENTERTAINMENT-AT-HOSPITALS-LIDIA-H Download

How can creative opportunities be improved for artists and aspiring artists living with intellectual and developmental disabilties (IDD)?

I approached this brief reframing the question: What field am I both interested and uncomfortable with and why? I have always been an advocate for creative social inclusion and diversity and yet I had found myself unable to name any artists with an intellectual or developmental disability. Now, that has changed.

This might have been due to the lack of mainstream spotlight to their work, or inclusivity in Art History curriculum or my lack of thought to consider artists beyond the ‘typical’ norm but what shocked me the most was the following thought: If making it or breaking into the creative arts industry is already hard enough for myself and other young artists I know… how would it be for an artist living with IDD? Or what support and opportunities will a person living with IDD receive if they aspired to become an artist?

Judith Scott, Fiber artist

Artist from Creative Growth (Oakland). In 1987, Sylvia Seventy was a visiting artist with Creative Growth and introduced Scott to fibre materials during her workshop.

This thinking led to the study of publications and journals, on disability arts, social inclusion, the social disability model, arts and IDD, inclusive curation, the arts educational curriculum, and led me to discover an extensive amount of visual art work (specifically in fine art) of artist from different organizations. It also introduced me to a lot of complex debates in academia surrounding the theme of artists living with IDD – and the linking to the genre of art brut, outsider art, disability arts and therapeutic art.

This has personally been one of the most transformative experiences, from not being able to mention one artist living with IDD to admiring the incredible artwork that is currently out there; and yet still faces difficulty to gain the spotlight. I’ve realised how much great art I’ve been missing out and how many distinct perspectives can be missed or go unrecognised and unvalued if not given the right support, inclusion and opportunities to thrive.

Judith Scott’s enigmatic sculptures at the Brooklyn Museum

This one question seemed to be a result of the research, as it is not that there are not artists living with IDD, the issue is that they are not being exposed enough or given the artistic support to develop their artistry: How can the exposure, support and access to the contemporary art world be improved for artists living with IDD? To what degree are the existing organizations helping artists and how can this model be applied in locations that do not have such support? Would including and discussing art works by artists with IDD diversify the arts educational curriculum and help create more tolerant conversation around the subjectivity of being ‘abled’ and ‘disabled’?

“People with intellectual or developmental disabilities are arguably the most marginalized members of our society and have historically suffered oppression. They have not experienced the same access to the arts as non-disabled people; artists with intellectual disabilities are typically situated within a therapeutic paradigm and excluded from institutional structures of contemporary art”
Sara Lige, Adults with Intellectual Disabilities and the Visual Arts: “It’s NOT Art Therapy!”

As I look back into my journey throughout this brief, I must say I have seen the sole intention of the course itself with this project; up until this point I’d been blinded by the impulsivity of my own creative drive without a depth of critical investigation and reflection. It has been with this initial research that I have rediscovered the importance of in-depth investigation prior to jumping to any conclusions and or propose any solutions. I’m now excited to consider this study as possibility for my major project.

I created a questionnaire in which I asked participants (artists) about artists living with IDD and inclusivity and diversity in the contemporary art world.

Here are some of the responses:

“I think that differently abled people offer a fresh perspective on the world. Their participation in artistic roles not only offers a greater understanding of their experiences, leading to a more tolerant society, but also the opportunity to share new stories and ideas.”
“I don’t believe intellectually disabled artists are represented enough, and cannot think of one name or face from the industry I work in.”
“I believe there are steps required to make the art world more inclusive. It’s subjective nature means that people of all “abilities” can and should thrive. Locally I have enjoyed the work of support groups helping intellectually disabled adults develop new skills and find purpose through art.”
“Are they represent enough? Hell no!!! I honestly can’t think of any names of artist that are intellectually disabled which is awful!”
“artists with disabilities are usually cast away from the spotlight of perfection that makes them marketable, or artists who have disabilities usually try to hide them to maintain their image of perfection. i think the most awareness i’ve gotten about an artist with a disability in the spotlight of social media has been when actors talk about themselves having dyslexia or a learning difficulty that’s affected their job.”
“art is a way of understanding the world and the people around us – expression shouldn’t be segregated to a specific group of people with certain abilities over others.”

Bibliography

Albert, B. (ed.): In or out of the mainstream? Lesson from research on disability and development cooperation. The Disability Press, Leeds (2006)

Haller, B.A.: Representing disability in an ableist world: Essays on mass media. The Advocado Press, Louisville (2010)

Buckley, S., Bird, G., Sacks, B., Archer, T.: A comparison of mainstream and special education for teenagers with Down syndrome: Implications for parents and teachers. Down Syndrome News and Update 2, 46–54 (2005)

D’Haem, H.: Special at school but lonely at home: An alternative friendship group for adolescents with Down Syndrome. Down Syndrome Research and Practice 12, 107–111 (2008)

Rimmerman, A. (2012). Social Inclusion of People with Disabilities: National and International Perspectives. In Social Inclusion of People with Disabilities: National and International Perspectives(Cambridge Disability Law and Policy Series, pp. I-Ii). Cambridge: Cambridge University Press.

Chapter 2 (In ‘Implementing the Social Model of Disability: Theory and Research’ edited by Colin Barnes and Geof Mercer (2004); Leeds: The Disability Press, pp. 18-31)

Duggan, C., & Linehan, C. (2013). The role of ‘natural supports’ in promoting independent living for people with disabilities; a review of existing literature. British Journal of Learning Disabilities, 41(3), 199-207.

Hall, S. A. (2009). The social inclusion of people with disabilities: A qualitative meta-analysis. Journal of Ethnographic and Qualitative Research, 3, 162–173.

Hartup W. W. & Stevens N. (1999) Friendships and adaptation across the life span. Current Directions in Psychological Science 8, 76–79

Lloyd, C., Tse, S., Deane, F.P. (2006). Community participation and social inclusion: How practitioners can make a difference. Australian e-Journal for the Advancement of Mental Health, 5(3)

Inclusive Curation Guidebook by Jade French

Adults with Intellectual Disabilities and the Visual Arts: “It’s NOT Art Therapy!” by Sara Lige

Simoni Symeonidou (2019) Disability, the arts and the curriculum: Is there common ground?, European Journal of Special Needs Education, 34:1, 50-65, DOI: 10.1080/08856257.2018.1435012

Some art & IDD organisations model studied:

Creative Growth Art Center (Oakland, USA)

Creativity Explored (San Francisco, USA)

Art Project Australia

Studio A Australia

Bus Stop Films Australia

Atelier Yamarami Japan

LAND studio & Gallery NY, USA

Pure Vision, NY, USA

Riera Studio, Havana Cuba

Atelier Goldstein, Frankfurt, Germany

Ampans, Manresa, Catalonia SP

WAC arts, London UK

Art Box London , UK