Some current books available somehow related to this:
The selfish pig’s guide to caring by Hugh Marigott
Okay, so this book seems really interesting because it has an informal, direct, and open way of not just communicating the writer’s journey of being unprepared for caring but also touching on subjects that are relatable and applicable to many who might find themselves in the same boat. It has a nonchalant air to the writing but I like its clarity in what the book is NOT about. Stating he’s not a medical practitioner nor psychologist nor it’s a how to care, but instead lessons, learnings and reflections that hopefully resonate. The book has got 247 ratings, most of 4.5 stars on Amazon and some of the comments include:
“This self-help manual is a delightful change of pace for the caregiver. With humor & practicality, Mr. Marriott provides understanding & support for anyone who’s dealing with the frustrations & stress of being a primary carer for an ill loved one.”
“Common sense different book for the 24/7 care-giver. This is a must. He writes and has a bit of humor woven into the very helpful chapters. It is not like other books which dwell on the legalities. He tells what to expect, what you may feel, and options for dealing with the issues and stress…all in a caring way. He lived it himself so he knows what it is like”
“This book was written from the caregiver’s point of view and I really liked that a lot. There is almost nothing out there that speaks to the person doing this lonely job. “
“This book helped me realize I was not alone. I would recommend it to anyone who cares for anyone especially a spouse. “
“First time in a few month of my caring life I was able to laugh at myself and put things in perspective. My piglet (Person I Give Endless Love and Therapy) is sleeping 🙂 I got stronger. “
Things I Wish I’d Known: Cancer Caregivers Speak Out
by Deborah J. Cornwall
Family caregivers are the unsung heroes of the life-saving drama that’s triggered by a cancer diagnosis. Nearly three quarters of American households will find themselves caring for a cancer patient at one point in their lives. This book is the first to capture their thoughts, feelings, and insights on a large scale. It is based on 101 formal interviews with non-professional caregivers (some of whom are cancer survivors themselves), covering 122 patients in 19 states and Canada.
This book also has 4.5 stars, on Amazon including comments like:
“Wasn’t what I was looking for. I needed support advice. My Sister had stage 4 pancreatic cancer and she was extremely angry. I needed help understanding the stages and how to help support her. As well as help me not get upset with her for yelling.”
“Deborah J. Cornwall eases the guilt of the compassionate caregiver who may have begun to resent their role even as their concer-stricken loved one struggles with life and death. In “Things I Wish I’d Known: Cancer Caregivers Speak Out, the stories of those who have been there elegantly portray the struggles of those powerless in the face of watching a loved one so ill”
“Deborah J. Cornwall eases the guilt of the compassionate caregiver who may have begun to resent their role even as their concer-stricken loved one struggles with life and death. In “Things I Wish I’d Known: Cancer Caregivers Speak Out, the stories of those who have been there elegantly portray the struggles of those powerless in the face of watching a loved one so ill”
Observation:
Based on the research of books available these two seem to be the most relevant in the act of caring, one centred in cancer cancer and the other one in general unpaid care. I have found both extremely interesting in terms of approaches as they’re varied, I will read both to have a better conclusion on it- however, from the examples and comments they both seem to be books responding to a community who is truly in need of targeted support books.
Hope insisted we stayed on to discuss not just the talk but our own personal feelings – I took this opportunity to express my thoughts about narrative and my own project. Unfortunately, this wasn’t recorded for ethical and privacy reasons and Hope mentioned that, if the time is found, she’d be able to send me written feedback about the project. I have send her an email with it as well.
Anyway, I expressed my project: I have caregivers on one side, patients and two objectives: awareness and/or support.
She used her own example, as a New York Times best-seller of the book Motherless Daughters, that highlights her own story with grief, after her mother passed away from cancer when she was 17.
She explained that during her university studies, she too had been given an assignment to develop a portrait project on someone or something and she had decided to do it on Bruce Springsteen and music of her generation. She said it was something that resonated with many and that was relevant to the time. However, what she noticed was that she would spend most of her time actually writing about a boyfriend she had the year after her mum died (also the year of a lot of Bruce Springsteen). What she noticed was that she had been with him because he was also going through grief during that period, and in a way – they’d found comfort in each other without necessarily talking about grief.
She had found herself writing about grief without knowing – and when she presented her essay project to the class, her teacher pointed out the project wasn’t about bruce and his music but instead, about grief and support.
She then used this base to start writing a book proposal and went on to collect 24 stories from different women going through the same grief of loosing a mother. What she realised is that some stories carried similar elements and others complete different ways, but what she thought was most wonderful was the idea that they found comfort in speaking to someone else who understands.
The idea of feeling alone during one of the hardest times of your life was something that Hope had mentioned was very relevant to her own story; and that when she created a book story she had initially intentioned it to be just about the other women’s stories and not her own. However, her teachers suggested that it was her story the conducting one and that to leave it out would be again, like the Bruce Springsteen case.
She agreed and drafted her proposal, this got her an agent and publishers interests – this served as a prompt to write the full book quite early on in her life after that project, and when published she mentions being contacted by so many women across the world, through letters, letting her know how much comfort and relatability and support her book brought to them. She mentions the book as her own intervention, along with the essay and the proposal.
n terms of feedback, I got to briefly explain my situation along with the idea of the book and the complex thought between building awareness or creating support and she expressed that by creating support I’d be ultimately building awareness. She also told me include my story as the conducting one, as proven with my research, people often need that push to open themselves up in the first place. Finally, she suggested once I have a first draft to send it over.
What I have learned from Hope’s trajectory
Much of Hope’s journey resonated with mine. Caught up doing a masters where I cannot back down from because of a scholarship and therefore, having to do it while being a caregiver has been complicated. And much of my headspace does not process focusing on other information that isn’t what my reality currently is. I have gone in cycles trying to understand what is it that I want to achieve? Who am I trying to help? What am I focusing on? Because I’ve gone through so many unexpected changes in a matter of six months that things can be a bit of a rollercoaster.
I find myself in most of my free time understanding how to deal with complex emotions, the other time I spend speaking to people who are going through the same and the other, reading up on heavy data hoping to find some optimistic journal to hold on to and finally, most of the time I’m supporting my mum with fear and love.
My writing was clear: it resonated with many people currently going through the same, being the main supporters of a loved living with a life-threatening disease
However, there are little books about the caregiver’s cancer journey; how to support oneself, the other and how to keep your life going as well. The only available ones are few that discuss a lot of the technicalities but perhaps, little about the complexities of thought and heart.
The brief but intense and practical discussion with Hope helped me understand where my project could head, who it could support and how I could make it happen. This in itself, has served as a way to understand and validate the relevance of narrative as a tool of support. And to start feeling less guilty about not focusing on a theme which is not linked to my personal circumstances.
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.
Art work by Louis DeMarco from LAND
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.
Art work by Raquel Albarran from LAND
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
