Sexuality and relationship experiences of women with spinal cord injury: reflections from an Indian context

Abstract

Spinal cord injury (SCI) is one of the most devastating physical disabilities. It leads to varying degrees of loss in sensations and mobility below the level of injury and causes loss in autonomic functions, such as bladder/bowel control, and sexual impairments. Research, mostly conducted in the developed western nations, reveals that coming to terms with one’s sexuality after SCI is most crucial for early reintegration in the society and quality of life for persons with SCI. Thus, experts advocate that the sexual rehabilitation of persons with SCI is an integral component of comprehensive rehabilitation. In the Indian context, however, the sexuality of persons with SCI, particularly women, has been largely overlooked by the disability rights movement, and discourses on gender, sexuality and rehabilitation. This article is based on an in-depth study of the experiences of sexuality and intimate relationships of 24 women with SCI in India. It demonstrates that sexuality and intimate relationships are integral aspects of health and well-being for women. But there are wide gaps in the sexual rehabilitation and support needs for women with SCI in India, making their sexual adjustment extremely challenging. By analysing women’s journeys of sexual adjustment and rediscovery of sexual pleasure that echo their voices as sexual beings, this article argues for the development of evidence-based and gender-sensitive sexual rehabilitation services for women with SCI in India.

Résumé

Les lésions de la moëlle épinière (LME) sont l’un des handicaps physiques les plus dévastateurs qui aboutissent à plusieurs degrés de perte de sensations et de mobilité au-dessous du niveau de la lésion et qui provoquent une perte des fonctions autonomes, avec par exemple une incontinence urinaire et fécale, et des troubles sexuels. La recherche, principalement menée dans les pays occidentaux développés, révèle que l’acceptation de la sexualité après une LME est cruciale pour une réinsertion rapide dans la société et la qualité de vie des patients. Par conséquent, les experts avancent que la rééducation sexuelle des personnes atteintes d’une LME fait partie intégrante d’une réadaptation complète. Dans le contexte indien, cependant, la sexualité des personnes avec LME, en particulier des femmes, a été largement ignorée par le mouvement de défense des droits des personnes handicapées, ainsi que par les discours sur le genre, la sexualité et la réadaptation. Cet article est fondé sur une étude approfondie des expériences de la sexualité et des relations intimes de 24 femmes atteintes d’une LME en Inde. Il démontre que la sexualité et les relations intimes sont des éléments de la santé et du bien-être des femmes. Mais il existe de vastes lacunes dans les besoins de rééducation sexuelle et de soutien pour les femmes atteintes de LME en Inde, ce qui rend extrêmement problématique leur ajustement sexuel. En analysant le parcours des femmes vers l’ajustement sexuel et la redécouverte du plaisir sexuel et en se faisant l’écho de leur voix comme êtres sexuels, cet article plaide en faveur du développement de services de rééducation sexuelle à base factuelle et sensibles aux différences de genre pour les femmes avec une LME en Inde.

Resumen

La lesión de la médula espinal (LME) es una de las discapacidades físicas más devastadoras, que causa diversos grados de pérdida de sensaciones y movilidad por debajo del nivel de lesión y causa pérdida de funciones autónomas, tales como control de la vejiga o el intestino y deficiencias sexuales. Las investigaciones, en su mayoría realizadas en naciones occidentales desarrolladas, revelan que adaptarse a su sexualidad después de una LME es imperativo para la reintegración temprana en la sociedad y para la calidad de vida de las personas con LME. Por ello, los expertos argumentan que la rehabilitación sexual de las personas con LME es un componente fundamental de la rehabilitación integral. Sin embargo, en el contexto indio, la sexualidad de las personas con LME, en particular las mujeres, casi no ha recibido la atención del movimiento de derechos de personas con discapacidad ni de los discursos sobre género, sexualidad y rehabilitación. Este artículo se basa en un estudio a fondo de las experiencias de sexualidad y relaciones íntimas de 24 mujeres con LME en India. Demuestra que la sexualidad y las relaciones íntimas son aspectos fundamentales de la salud y el bienestar de las mujeres. Pero existen amplias brechas en las necesidades de rehabilitación sexual y apoyo para mujeres con LME en India, por lo cual su ajuste sexual es sumamente difícil. Al analizar las vivencias de las mujeres con el ajuste sexual y el redescubrimiento del placer sexual que hacen eco de sus voces como seres sexuales, este artículo aboga por crear servicios de rehabilitación sexual basados en evidencia y sensibles al género para las mujeres con LME en India.

Keywords:

• spinal cord injury
• women
• sexuality and disability
• sexual rehabilitation
• India

Acknowledgements

I would like to express my heartfelt gratitude to the participants of this research. This manuscript has been shaped under the SRHM Mentoring Programme on Rights and Evidence-based Knowledge Creation. The author deeply appreciates the programme, all expert panelists and participants for the thought-provoking sessions and enriching feedback on this work. I would like to thank my mentor for this fellowship, Prof. Renu Addlakha for her guidance in shaping this manuscript. This work is based on the author’s doctoral research conducted at the Tata Institute of Social Sciences. The author would like to thank the thesis supervisor, Prof. M Sivakami for her constant support and motivation. I am deeply thankful to the Spinal Foundation for their support in facilitating fieldwork.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Data availability statement

The authors confirm that the data supporting the findings of this study are available within the article.

Notes

† See Sandowski¹¹ and Cole.¹²

‡ Bangladesh, China, India, Malaysia, Nepal, Pakistan, Sri Lana, Thailand, and Vietnam.

§ Paralysis of the lower limbs and trunk without the involvement of the upper limbs.

¶ Formerly called quadriplegia and entails a paralysis of all the four limbs and trunk.

** A method of bowel management where the injured person/assistant gently inserts a gloved lubricated forefinger beyond the anal sphincter and gently moves it in stimulating circulating motions to facilitate bowel movements.

†† Article 25.1, Universal Declaration of Human Rights affirms: “Everyone has the right to a standard of living adequate for the health of himself … necessary social services”. Further, the International Covenant on Economic, Social and Cultural Rights provides the most comprehensive article (12.1) on the right to health. While article 12.2 enumerates, by way of illustration, a number of “steps to be taken by the States … to achieve the full realisation of this right”. Additionally, the right to health is recognised, interalia, in article 5 (e) (iv) of the International Convention on the Elimination of All Forms of Racial Discrimination of 1965, in articles 11.1 (f), 12 of the Convention on the Elimination of All Forms of Discrimination against Women of 1979 and in article 24 of the Convention on the Rights of the Child of 1989. Several regional human rights instruments also recognise the right to health.

‡‡ Article 25: Right to Health: “ … persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability. States Parties … to ensure access … including in the area of SRH … (b) Provide those health services … including early identification and intervention … (c) … as close as possible to people’s own communities, including in rural areas”.

§§ Article 26: Habilitation and rehabilitation: “States Parties shall take effective and appropriate measures … to attain and maintain maximum independence … full inclusion and participation in all aspects of life. States Parties … extend comprehensive habilitation and rehabilitation services and programmes, particularly in the areas of health … (a) Begin at the earliest possible stage, … (b) … including in rural areas”.

¶¶ General comment No. 22 (2016) on the right to SRH (article 12 of the International Covenant on Economic, Social and Cultural Rights).

*** http://www.rehabcouncil.nic.in/writereaddata/rciact.pdf.