A personal geography of care and disability

ABSTRACT

This research focuses on the bodies, feelings, spaces and places of care and disability. It is informed by feminist geography, and geographies of embodiment and emotion. Using autobiography as a method of inquiry I share my experience of caring for my young disabled son in relation to the disability needs assessment in Aotearoa New Zealand. I argue that embodiment and emotions are often not considered by geographers researching care, and in particular, geographers have been slow to account for their own personal care geographies. I articulate my experience of care and disability and show that the embodied emotions of care emerge in relation to people, things, place and space. This article concludes that any attempt to understand care needs to consider the everyday realities of carers and the paradoxical embodied and emotional spaces they occupy. Personal accounts and a focus on individually felt emotions should always be considered alongside relationality, collective experience, power and politics.

KEYWORDS:

• Personal care geographies
• embodiment and emotions
• disability
• feminist geography
• disability needs assessment
• autobiography

Acknowledgments

I would like to thank the anonymous reviewers for their considered and encouraging comments, which helped strengthen this article. I would also like to thank Bernadette Macartney for her comments on an earlier draft, and to Lynda Johnston for all her care and for always caring.

Disclosure statement

No potential conflict of interest was reported by the author.

Notes

1. I used ‘disabled people’ to situate this work within the social model of disability theoretical language, but not in a way that sets up a binary distinction between the medical and social models of disability.

2. The Ministry of Health leads Aotearoa New Zealand’s health and disability system and has overall responsibility for the management and development of that system.

3. ‘The Ministry funds services for people with a physical, intellectual and/or sensory impairment or disability that is: likely to continue for a minimum of 6 months; reduces your ability to function independently, to the extent that ongoing support is required. In addition, a person with Autism Spectrum Disorder may also be eligible for a needs assessment. These are usually for people under the age of 65.’ (https://www.health.govt.nz/your-health/services-and-support/disability-services/getting-support-disability/am-i-eligible-ministry-funded-support-services).

4. See full range of support https://www.health.govt.nz/your-health/services-and-support/disability-services/types-disability-support

5. At the time of writing this article, the Aotearoa New Zealand government was in the process of trialling a pilot of a new disability support system that is based on personalization, choice and control, see http://www.enablinggoodlives.co.nz/. The new system is not nationally available. The experiences reflected upon are specific to the way the national system is currently operating.

6. In Aotearoa New Zealand, the noun ‘mum’ is used and means the same as ‘mom’.

7. This article is being used to help inform the development of training resources as part of my paid employment as a researcher at Imagine Better – a disability rights and advocacy organization. It is my hope that through sharing a personal account of care and disability, and the needs assessment process, that it may support agencies and practitioners working in the sector to better support disabled people and their carers.

8. Sole Parent Support is a government benefit that is paid to single parents to cover the costs of raising children in Aotearoa New Zealand.

9. This is a pseudonym.

10. See, for example, https://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=12224995