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Invisibility – In Visibility
Published in Phillip Joy, Megan Aston, Queering Nutrition and Dietetics, 2023
Invisible disability designates a disability that is not apparent. There can be clues that a person has T1D – insulin pump, beeping devices, blood sugar checks – but as a chronic disease, it is largely considered invisible, and diabetic people can conceal T1D (Sanders et al., 2019; Syma, 2019).
Project Career: The Matching Person and Technology Model and Everyday Technology in Action
Published in Christopher M. Hayre, Dave J. Muller, Marcia J. Scherer, Everyday Technologies in Healthcare, 2019
Deborah Minton, Elaine Sampson, Amanda Nardone, Callista Stauffer
It is vital that individuals who have incurred a TBI receive appropriate accommodations to remove educational and vocational barriers. Research has long identified education as one a primary conduit to competitive employment and higher salaries. Accommodations enable students with TBI to manage and complete academic requirements, job tasks and engage as active and productive members of their community. Unfortunately, biased public perceptions and negative attitudes may affect accommodation requests. Many times, TBIs are an invisible disability forcing those who incurred one to challenge stigmas by providing information about their injury and its impact to receive accommodations (Bowen, 2008; Kelly et al., 2012). Others may attribute displays of behaviours such as disinhibition, aggression or excessive self-disclosure to one’s personality instead of a brain injury, failing to acknowledge the inherent challenges of a TBI (Ruoff, 2008).
A personal perspective on CVI
Published in John Ravenscroft, The Routledge Handbook of Visual Impairment, 2019
Imagine living in a world of visual uncertainty. A world that at times seems to shimmer and shake and there is nothing you can do to make the image you are seeing stay still. A world where you can suddenly be surrounded by unknown faces, even when you are in a room full of your family and friends. A world where personal possessions, such as clothing, books and jewellery can suddenly disappear into a black hole, seemingly never to be found again, no matter how hard you try to find them. A world that in the blink of an eye, can become so frightening and overwhelming you feel as if your life is in danger and the resulting panic you feel makes it hard for you to breathe. A world that at times makes you start to doubt your own sanity and ability to mix with your peers. Now imagine that this world of visual uncertainty is actually a common, yet often undiagnosed, invisible disability. A disability that is not only invisible to everyone around you, but also invisible to you. Now imagine living with this disability and in this world for years, without realising that your brain is actually not correctly interpreting the image your eyes are seeing. I don’t have to imagine what this world would be like, I live with this uncertainty every day.
Exploring the lived experiences of ethnic minority youth with disabilities: a systematic review and meta synthesis of qualitative data
Published in Disability and Rehabilitation, 2023
Sally Lindsay, Hiba Ahmed, Vanessa Tomas, Abby Vijayakumar
Eleven studies (from the US and UK) showed themes related to stigma, discrimination [10,25,59,66,68,74–76] and/or racism [62,64,68,72]. For example, American Indian and Alaskan Native youth with physical disabilities in the US encountered discrimination and a lack of recognition of cultural needs by health care providers [10]. Native American, Latino, Hispanic, and African American youth with disabilities living in the US experienced stereotypes, insensitivity and discrimination [25,66,75]. Muslim and Sikh youth with disabilities in the US experienced discrimination from teachers [59]. Meanwhile, in McDonald et al.’s study [76] youth with learning disabilities in the US reported that having an invisible disability helped them to pass as non-disabled and lessened disability discrimination from and within racial and ethnic groups.
Factors that influence quality of life in patients with multiple sclerosis in Saudi Arabia
Published in Disability and Rehabilitation, 2022
Fuad A. Abdulla, Faisal M. Albagmi, Fahd A. Al-Khamis
Fatigued patients as determined by the MFIS showed lower scores of all measured QOL components. Fatigue was one of the two main predictors of QOL. Fatigue is among the most common problems facing patients with MS with an incidence rate of more than 90% [55]. However, there is no agreement on a fatigue definition [56], its pathophysiology is poorly understood and it is not easy to manage [57]. The nature of fatigue in patients with MS is not similar to the classical fatigue which normal people experience. Fatigue in patients with MS is unrelated to physical activity and has been reported with minimal or no physical effort [58]. It may also be unrelated to physical disability [59]. Therefore, fatigue can be labelled as an “invisible disability”. Fatigue is known to be one of the leading factors which affect the well-being of patients with MS [30]. Fatigue is a major factor in employability [60]. In the present study, the level of fatigue in employed patients (31.9 ± 18.8) was significantly lower than that recorded in unemployed patients (48.5 ± 16.6), p < .001. The difference was still highly significant after adjusting for level of disability, age and depression. Fatigue also limit the ability of patients with MS to interact and socialize with others [61]. Implementing mixed approaches (pharmacological and behavioral) to manage fatigue in patients with MS has shown promising results in reducing the level of fatigue and improving QOL [56]. It is crucial for health care providers to asses (using appropriate tools) and manage fatigue.
There’s no cure for brain injury: work-related stress in brain injury rehabilitation professionals
Published in Brain Injury, 2019
Gillian Murray, Tessa Hart, Andrea Doyle, Casey Bohrman, Chelsea Toth
Participants shared frustrations about the lack of funding for the continuum of care that is desperately needed by survivors of TBI. Most of the participants lived in areas where there was no funding for long-term residential care or outpatient cognitive rehabilitation. Many shared stories about individuals being released from the hospital too soon, not having access to acute inpatient rehabilitation, the lack of physical medicine and rehabilitation physicians, and the lack of behavioral health providers who will treat TBI. Participants raised further concerns about the challenging and complex process of applying for specialised brain injury services, such as Medicaid waivers. Many participants recalled clients who were denied services due to an evaluator’s lack of understanding of brain injury as an ‘invisible’ disability.