Loading...
Stories of support. Invisible disabilities made visible (through the lens of auto-ethnography)
Promotor / Advisor
Keyword
Location research
Bogota, Colombia
Date
2025-06-09
License
CC0 1.0 Universal
Publisher
Language
en
ISSN
ISBN
Citations
Altmetric:
Research Projects
Organizational Units
Journal Issue
Abstract
See the full summary on the conference website as well: https://conferenciaclacso.org/programa/resumen_ponencia.php?&ponencia=Conf-1-703-74494&p=8457
Background
From a presumed ‘healthy’ life to suddenly living with type 1 diabetes for life. This autoethnography narrates my journey before my diagnosis until the present day, years after what I then experienced as the ‘verdict’, i.e., the day I was diagnosed. At 20, I found myself reworking my social identity after an unexpected lifelong diagnosis. I was undoubtedly influenced on the personal and professional level as I rediscovered my identity, career ambitions and identity and established relationships. I rediscovered each environment already known to me and redefined how I was going to reestablish my existing relationships. For this reason, I delve into the auto-ethnographic method to study how support in social and organizational environments, such as family, friends, professors, colleagues, and medical experts played a role in my experiences as a person with an (invisible) disability. Based on recollections of my lived experiences and those of my loved ones, I offer my experience as a lesson and stimulator for organizing support systems around people with an invisible disability to help achieve and maintain desired health outcomes. I show how unknown and unmatched needs were overlooked and how these impacted my self-identity, overall well-being, and survival strategies. I hope to stimulate further research on the topic of the impact of (informal and formal) support systems on self-identity after lifelong diagnosis, especially in small island contexts like Aruba. This auto-ethnography aims at highlighting the organizational aspects within these different contexts and how the organization processes unfolds while the individual manages their condition within these environments such as school, work and other public environments the individual participants in.
Problem statement
There is limited ethnographic research about diagnosis and ‘survival strategies’ in small island contexts. Authors such as Nash (2015) have studied the factors that play a role in the process of dealing with diagnosis, thus grief, in the general context. The author discusses suggested approaches from psychological models for effective diagnosis conversations, a scenario I discuss in my auto-ethnography. This part of living with a disability is also important because it affects those in the individual's surroundings. The five stages of the grief process by Kubler-Ross (1997 as cited in Nash, 2015); denial, anger, bargaining, depression, and acceptance underlines the importance of acknowledging not only the individual's feelings but also the relationships built in a formal or informal environment. Considering that environment and the dynamic play a great part in the experience of a person, I aim at describing and narrating the realities faced whether positive or negative. These realities may seem different when living in a small and even multicultural community and hence this auto-ethnography will map out how a person navigates and forms strategies to deal with a community in which the needs are misunderstood, unmatched and unmanaged. The focus is on how individuals with an invisible disability can engage in organizing their respective social and organizational environments while managing their disability.
Theoretical background
An estimated 1.3 billion individuals,16% of the global population, experience significant disability. Individuals who have ‘’long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.’’ (Disability, 2024). The understanding of disability has shifted and now includes the physical, social, and political context of the individual. It also carries an understanding of the interaction between the person’s condition or impairment and influencing factors within their environment. Making the world accessible is a constant challenge, and while many efforts are being made, there is much more to be done (Disability, 2024). The realities behind individuals experiencing a disability are harsh. Statistics show that some individuals living with a disability die prematurely, up to 20 years earlier compared to individuals who live without a disability due to inequities like lack of financial support or education. Health inequities are continuously prominent, and individuals are faced with unfair conditions such as stigma, discrimination, and exclusion from education and employment (WHO, 2023). The WHO identified factors that contribute to these inequities: structural factors, social determinants of health, risk factors, and health systems. These factors are experienced in different forms; ableism, limiting laws & policies, exclusion from education & employment, higher risk of developing non communicable diseases, discriminatory practices, and lack of information or data analysis on disabilities (WHO, 2023). People with disabilities are reliant on (formal) social support mechanisms, including public service support, to engage in health, community and work activities.
Aim, research question and auto-ethnography
This auto-ethnography aims at shedding light on how the environment of the individual and relationships impact the so-called identity renewal or re-discovery process after diagnosis – how environments help or hinder the reworking of who you are. Instead of focusing on ‘the person’ with ‘a disability’ and making sure that the person ‘can cope’, I see invisible conditions as relational: institutional, cultural and social environments affect how living with a condition or disability are played out. The support of an online community (Kontoangelos et al., 2022), support from adult friends and parents (Bekelman, 2023) and public support (including professional support) have shown to be influential on attitudes and behavior in regard to one’s own diabetes management positively. The practical support, particularly during stressful times, tends a person get through the hard times. Those who do not experience diabetes daily may not understand the feeling of burden it brings to the person's life. To cover these aims, the following question was formulated for the autoethnographic article: How do individuals who are (suddenly) diagnosed with a lifelong condition (such as diabetes) supported by multiple environments in a small island context (such as Aruba)? I used autoethnography and narrative research techniques to describe personal experience with the aim of understanding cultural experiences (Ellis, 2004; Holman Jones, 2005 as cited in Ellis et al., 2011). While I feature my own diagnosis experiences, I describe certain characteristics and experiences in relation to my Caribbean cultural background through short stories and on some occasions gender as it helps shed light on aspects that might not be usually considered in the research process (Denzin & Lincoln, 2013; Finlay, 2016 as cited in Ellis et al. 2011.
(Preliminary) conclusions
All diagnosis stories are different, tailored to everyone’s life, uniqueness and context. The individual with the invisible disability occasionally interacts with the medical field for guidance and control, but most of the time life happens at school, work, recreational club and family. Smallness may resemble closeness, warmth and continuous company, however, in the case of a stressful condition, these feelings may vanish or even so, transform into feelings of dependence, anxiety and restrain. Individuals who are suddenly diagnosed with a lifelong condition, do not always navigate their relationships, but rather ‘swim against the tides’ when they are removed from leadership of their own ship. Besides feeling the loss of control of your own body, you might experience an intense feeling of dependency because you perceive a sense of failure while self-managing. While you attempt to reach a level of confidence and acceptance, you are constantly navigating between your own negative thoughts and the imposed survival strategies from those who try to support and help you carry the burden. Individuals in the informal environment, such as family and friends, might feel that because of the proximity, they are expected to play a steering role in the journey of the person with the disability. They overlook that a condition such as diabetes is an ongoing self-management quest where the individual – no matter the circumstances – needs to reach a level of emancipation and autonomy in order to reach acceptance at the highest degree possible. Strategies by the person with the disability are developed when concerns and challenges are identified. The complexity that is dealt with is being able to support the individual with the disability without taking their autonomy for self-management. Letting them be the captain of their ship and identify which principles in their environment no longer fits their renewed identity or lifestyle. In the organizational context this means that the dialogues and connections should move to a personalized support, taking the stages of grief and personal needs into consideration. Once the space of support is created, it cannot be erased or traced back as it is considered as an ally ship. It cannot be seen or grasped, but a difference can be observed when the individual willingly asks for flexibility or for others to take over when it is needed. A distinction was made between the social and organizational environment, however, consequently, the same principle of support in multiple environments is portrayed, which is the boundary between solicited and unsolicited support, thus attention and respect to the individual’s autonomy. As such, individuals who have recently been diagnosed, do not always seek only an immediate solution or practices to help them self-manage but rather, a space that is willing and safe to navigate the complexities and novelty of everyday life more freely. Bit.ly link to full document and references: http://bit.ly/4gq51wt
Citation
Arias, N. (2025, June 9-12). Stories of support. Invisible disabilities made visible (through the lens of auto-ethnography). [Conference presentation summary]. X Conferencia Latino Americana y Caribeña de Ciencias Sociales, Bogota, Colombia. https://conferenciaclacso.org/programa/resumen_ponencia.php?&ponencia=Conf-1-703-74494&p=8457.
Sponsorship
Journal / Book / Conference
X Conferencia Latino Americana y Caribeña de Ciencias Sociales