Don't Stare at Me! Exploring the Lived Experiences of Adults with Disability
DOI:
https://doi.org/10.21776/ub.ijds.2018.5.1.2Keywords:
disability, self-concept, identity, sexuality, participation, employmentAbstract
The spirit of rights based approach calls for the meaningful involvement of people with disabilities in daily aspects of life and their participation is crucial if we want to build an inclusive and prosperous society. For achieving the aim of inclusion it becomes necessary to go by the slogan of disabled people's organizations i.e. Nothing about us, without us; this further defines the purpose of present paper which locates the perspectives of people with disabilities in terms of what it means to live with a disability. Much has been focussed on the opinions of caregivers when it comes to talking about people with disabilities thus keeping aside the insider's perspectives of living the phenomenon of disability. The lived experiences of people with disabilities is the need of an hour when across the globe thrust in on inclusion. The paper explores the identity, self-concept, self-consciousness, participation, sexuality, barriers, and employment, all seen through the eyes of the adults with disability. The adults with disabilities feel themselves as normal, want to be included by participating in social and economic domains and explore sexuality as non-disabled people; it is the presence of the barriers in social and environmental zones that hinder their inclusion. The databases searched included Google Scholar, Science Direct, Scopus, Elsevier, Proquest, Springer, and Sage; also the reference lists of journal articles were located.
References
Caldern-Almendros, Ignacio, and Rafael Caldern-Almendros. "Open the coffin and here I am: disability as oppression and education as liberation in the construction of personal identity." Disability & Society 31, no. 1 (February 12, 2016): 100-15. Accessed March 21, 2017. doi:10.1080/09687599.2015.1133400.
Baffoe, Michael. (2013). Stigma, Discrimination & Marginalization: Gateways to Oppression of Persons with Disabilities in Ghana, West Africa . Journal of Educational and Social Research 3, no. 1 (January 2013): 187-98. Accessed April 08, 2017. doi: 10.5901/jesr.2013.v3n1p187.
Bagatell, Nancy. (2007). Orchestrating voices: autism, identity and the power of discourse. Disability & Society 22, no. 4 (June 11, 2007): 413-26. Accessed May 02, 2017. doi:10.1080/09687590701337967.
Berk, Laura E. (1997). "Self and Social Understanding." In Child Development. 4th ed. United States of America
Bernert, Donna J. (2010). Sexuality and Disability in the Lives of Women with Intellectual Disabilities. Sexuality and Disability 29 (December 09, 2010): 129-41. Accessed March 21, 2017. doi: 10.1007/s11195-010-9190-4.
Bualar, Theeraphong. "Barriers to employment: voices of physically disabled rural women in Thailand." Community, Work & Family 17, no. 2 (June 08, 2013): 181-99. Accessed March 21, 2017. doi:10.1080/13668803.2013.806125.
Cardona, Gordon C. "Overcoming disabling barriers: disability and attitudes to disability within the Maltese context: an insider's perspective." Disability & Society 28, no. 2 (January 16, 2013): 279-84. Accessed March 21, 2017. doi:10.1 080/09687599.2012.753186.
Chib, Malini. "Celebrating Disabilities: Author Malini Chib Sheds New Light on Disability through Her Book." The Better India (web log), December 09, 2016. Accessed June 01, 2017. http://www.thebetterindia.com/77745/malini-chib-discuss-why-celebrate-disability/.
Cox, Bradley E., Kerry Thompson, Amelia Anderson, Amanda Mintz, Taylor Locks, Lindee Morgan, Jeffrey Edelstein, and Abigail Wolz. "College Experiences for Students with Autism Spectrum Disorder: Public Identity, Public Disclosure, and Institutional Support." Journal of College Student Development 58, no. 1 (January 2017): 71-87. Accessed March 21, 2017. doi:10.1353/csd.2017.0004.
Cunnah, Wendy. "Disabled students: identity, inclusion and work-based placements." Disability & Society 30, no. 2 (January 26, 2015): 213-26. Accessed March 21, 2017. doi:10.1080/09687599.2014.996282.
Deepak, Sunil, Jayanth Kumar, Cheluvaraju Sivarama, Ramesh Giriyappa, and Parthipan Ramaswamy. "Life stories of persons with intellectual disabilities in Mandya District, India." Knowledge Management for Development Journal, 2016, 8-24. Accessed February 26, 2017. http://journal.km4dev.org/.
"Defining sexual health." WHO. Accessed August 11, 2017. http://www.who.int/reproductivehealth/topics/sexual_health/sh_definitions/en/.
Enoch, Acheampong, Anthony Kwaku Edusei, Okyere Paul, Akohene Kofi Mensah, Rose Odotei Adjei, and Emmanuel Appiah-Brempong2. "We are not getting jobs: Job seeking Problems of People with Disability and Coping Strategies adopted in an Urban Traditional Community in Ghana." Disability, CBR and Inclusive Development 27, no. 1 (2016): 109-25. Accessed February 26, 2017. doi: 10.5463/DCID.v27i1.499.
Gallagher, Pamela, Mary-Ann O'Donovan, Anne Doyle, and Deirdre Desmond. "Environmental barriers, activity limitations and participation restrictions experienced by people with major limb amputation." Prosthetics and Orthotics International 35, no. 3 (2011): 278-84. doi:10.1177/0309364611407108.
Gartrell, Alexandra. "frog in a well: the exclusion of disabled people from work in Cambodia." Disability & Society 25, no. 3 (April 28, 2010): 289-301. Accessed May 09, 2017. doi: 10.1080/09687591003701207.
Gibson, Barbara E., Nancy L. Young, Ross E.g. Upshur, and Patricia Mckeever. "Men on the margin: A Bourdieusian examination of living into adulthood with muscular dystrophy." Social Science & Medicine 65, no. 3 (2007): 505-17. Accessed May 12, 2017. doi:10.1016/j.socscimed.2007.03.043.
Gustavsson, Anders, Catarina Nyberg, and Charles Westin. "Plurality and continuity—Understanding self-identity of persons with intellectual disability." European Journal of Disability Research 10 (October 15, 2016): 310-26. Accessed February 23, 2017. doi:10.1016/j.alter.2016.06.003.
Häggström A, Lund ML. The complexity of participation in daily life: a qualitative study of the experiences of persons with acquired brain injury. J Rehabil Med. 2008 Feb;40(2):89-95. doi: 10.2340/16501977-0138. PMID: 18509571.
Hanass-Hancock, Jill. "Interweaving Conceptualizations of Gender and Disability in the Context of Vulnerability to HIV/AIDS in KwaZulu-Natal, South Africa." Sexuality and Disability 27, no. 1 (2008): 35-47. Accessed April 14, 2017. doi:10.1007/s11195-008-9105-9.
"International Classification of Functioning, Disability and Health (ICF)." World Health Organization. 2001. Accessed August 12, 2017. http://www.who.int/classifications/icf/en/.
Islam, Zoebia. "Negotiating identities: the lives of Pakistani and Bangladeshi young disabled people." Disability & Society 23, no. 1 (December 05, 2007): 41-52. Accessed March 21, 2017. doi:10.1080/09687590701725625.
Kattari, Shanna K. "Sexual Experiences of Adults with Physical Disabilities: Negotiating with Sexual Partners." Sexuality and Disability 32 (September 25, 2014): 499-513. Accessed March 21, 2017. doi: 10.1007/s11195-014-9379-z.
Kim, Mikyong Minsun, and Brenda C. Williams. "Lived employment experiences of college students and graduates with physical disabilities in the United States." Disability & Society 27, no. 6 (April 30, 2012): 837-52. Accessed March 21, 2017. doi:10.1080/09687599.2012.673081.
Koca-Atabey, Mjde. "A personal validation of the social nature of disability: different environments, different experiences." Disability & Society 28, no. 7 (August 20, 2013): 1027-031. Accessed March 21, 2017. doi:10.1080/09687599.2013.820535.
Lamichhane, Kamal . "Employment situation and life changes for people with disabilities: evidence from Nepal." Disability & Society 27, no. 4 (March 22, 2012): 471-85. Accessed February 20, 2017. doi:10.1080/09687599.2012.659462.
Le Clair, Jill M. "Transformed identity: from disabled person to global Paralympian." Sport in Society 14, no. 9 (December 07, 2011): 1116-130. Accessed March 21, 2017. doi:10.1080/17430437.2011.614768.
Liddiard, Kirsty. "The work of disabled identities in intimate relationships." Disability & Society 29, no. 1 (May 08, 2013): 115-28. Accessed March 21, 2017. doi:10.1080/09687599.2013.776486.
Lin, Hsiu-Ching, Marie Knox, and Jennieffer Barr. "A grounded theory of living a life with a physical disability in Taiwan." Disability & Society 29, no. 6 (2014): 968-79. Accessed March 21, 2017. doi:10.1080/09687599.2014.902361.
Loja, Ema, Maria EmÃlia Costa, Bill Hughes, and Isabel Menezes. "Disability, embodiment and ableism: stories of resistance." Disability & Society 28, no. 2 (August 01, 2012): 190-203. Accessed May 01, 2017. doi:10.1080/09687599.2012.705057.
Lundberg, Neil R., Stacy Taniguchi, Bryan P. McCormick, and Catherine Tibbs. "Identity Negotiating: Redefining Stigmatized Identities through Adaptive Sports and Recreation Participation among Individuals with a Disability." Journal of Leisure Research 43, no. 2 (2011): 205-25. Accessed April 25, 2017.
Mattevi, Betina S., Juliana Bredemeier, Cláudia Fam, and Marcelo P. Fleck. "Quality of care, quality of life, and attitudes toward disabilities: perspectives from a qualitative focus group study in Porto Alegre, Brazil." Revista Panamericana de Salud Pública 31, no. 3 (2012): 188-96. Accessed May 1, 2017. doi:10.1590/s1020-49892012000300002.
McKenzie, Judith Anne. "Disabled people in rural South Africa talk about sexuality." Culture, Health & Sexuality 15, no. 3 (December 11, 2012): 372-86. Accessed April 12, 2017. doi: 10.1080/13691058.2012.748936 .
Milner, Paul, and Berni Kelly. "Community participation and inclusion: people with disabilities defining their place." Disability & Society 24, no. 1 (January 15, 2009): 47-62. Accessed February 20, 2017. doi:10.1080/09687590802535410.
Newton, Rita, Marcus Ormerod, and Pam Thomas. "Disabled people's experiences in the workplace environment in England." Equal Opportunities International 26, no. 6 (2007): 610-23. Accessed May 03, 2017. doi:10.1108/02610150710777079.
Norlyk, Annelise, Bente Martinsen, and Klaus Kjaer-Petersen. "Living with clipped wings—Patients’ experience of losing a leg." International Journal of Qualitative Studies on Health and Well-being 8, no. 1 (October 14, 2013): 21891. Accessed April 29, 2017. doi:10.3402/qhw.v8i0.21891.
Pande, Namita, and Shruti Tewari. "Understanding Coping with Distress due to Physical Disability ." Psychology and Developing Societies 23, no. 2 (2011): 177-209. Accessed April 16, 2017. doi: 10.1177/097133361102300203.
Papadimitriou, Christina. "Becoming enâ€wheeled: the situated accomplishment of reâ€embodiment as a wheelchair user after spinal cord injury." Disability & Society 23, no. 7 (December 03, 2008): 691-704. Accessed April 08, 2017. doi:10.1080/09687590802469420.
Parker, Malorie G., and Matthew K. Yau. "Sexuality, Identity and Women with Spinal Cord Injury." Sexuality and Disability 30 (July 10, 2011): 15-27. Accessed April 13, 2017. doi: 10.1007/s11195-011-9222-8.
Payne, Deborah Ann, Huhana Hickey, Huhana Nelson, Katherine Rees, Henrietta Bollinger, and Stephanie Hartley. "Physically disabled women and sexual identity: a PhotoVoice study." Disability & Society 31, no. 8 (September 29, 2016): 1030-049. Accessed March 21, 2017. doi:10.1080/09687599.2016.1230044.
Pestana, Claudio. "Exploring the self-concept of adults with mild learning disabilities." British Journal of Learning Disabilities 43 (2014): 16-23. Accessed March 21, 2017. doi:10.1111/bld.12081.
Peta, Christine , Judith McKenzie, Harsha Kathard, and Adelene Africa. "We are Not Asexual Beings: Disabled Women in Zimbabwe Talk About Their Active Sexuality." Sexuality Research and Social Policy, November 02, 2016. Accessed February 23, 2017. doi: 10.1007/s13178-016-0266-5.
Price, Pollie, Stephanie Stephenson, Lesha Krantz, and Kristine Ward. "Beyond My Front Door: The Occupational and Social Participation of Adults With Spinal Cord Injury ." Occupation, Participation and Health 31, no. 2 (2011). Accessed May 12, 2017. doi:10.3928/15394492-20100521-01.
Punch, Rene ´e , Merv Hyde, and Des Power. "Career and Workplace Experiences of Australian University Graduates Who Are Deaf or Hard of Hearing." Journal of Deaf Studies and Deaf Education 12, no. 4 (April 29, 2007): 504-17. Accessed May 02, 2017. doi:10.1093/deafed/enm011.
Ripat, JD, and RL Woodgate. "Self-perceived participation among adults with spinal cord injury: a grounded theory study." Spinal Cord 50 (July 03, 2012): 908-14. Accessed May 12, 2017. doi:10.1038/sc.2012.77.
Rule, Peter, and Taadi Ruth Modipa. "We Must Believe in Ourselves: Attitudes and Experiences of Adult Learners With Disabilities in KwaZulu-Natal, South Africa." Adult Education Quarterly 62, no. 2 (2012): 138-58. Accessed April 25, 2017. doi:10.1177/0741713611400303.
Sakellariou, Dikaios. "Sexuality and Disability: A Discussion on Care of the Self." Sexuality and Disability 30 (July 01, 2011): 187-97. Accessed March 21, 2017. doi: 10.1007/s11195-011-9219-3.
Saltes, Natasha. "Disability, identity and disclosure in the online dating environment." Disability & Society 28, no. 1 (June 12, 2012): 96-109. Accessed March 21, 2017. doi:10.1080/09687599.2012.695577.
Sheldon, Ann Popowich, Rebecca Renwick, and Karen K.Yoshida. "Exploring Body Image and Self-Concept of Men With Acquired Spinal Cord Injuries." American Journal of Men's Health 5, no. 4 (2011): 306-17. Accessed April 25, 2017. doi: 10.1177/1557988310375714.
Shier, Michael, John R. Graham, and Marion E. Jones. "Barriers to employment as experienced by disabled people: a qualitative analysis in Calgary and Regina, Canada." Disability & Society 24, no. 1 (January 15, 2009): 63-75. Accessed February 20, 2017. doi: 10.1080/09687590802535485.
Strømsø , Mette. Places of Participation The Lived Experience of Persons with Disabilities in Kampala/Uganda . Master's thesis, Norwegian University of Science and Technology - NTNU , 2008. Trondheim, 2008. 1-131. Accessed May 27, 2016.
Tagaki, Masakuni. "Narratives of Ambivalent Meanings of Acquired Physical Disability in Japan." SAGE Open, 2016. Accessed February 26, 2017. doi:10.1177/2158244016666310.
Taub, Diane E., Penelope A. McLorg, and April K. Bartnick. "Physical and social barriers to social relationships: voices of rural disabled women in the USA." Disability & Society 24, no. 2 (March 11, 2009): 201-15. Accessed March 21, 2017. doi:10.1080/09687590802652496.
Tijm, Mandy M., Huib Cornielje, and Anthony Kwaku Edusei. "WELCOME TO MY LIFE! PHOTOVOICE: NEEDS ASSESSMENT OF, AND BY, PERSONS WITH PHYSICAL DISABILITIES IN THE KUMASI METROPOLIS, GHANA ." Disability, CBR and Inclusive Development 22, no. 1 (2011): 55-72. Accessed February 22, 2017. doi: 10.5463/DCID.v22i1.12.
Valentim, Joaquim, and Edite Dinis. "The Image of Disability Among Intellectually Disabled People ." Papers on Social Representations 23 (2014): 24.1-4.17. Accessed February 22, 2017. http://www.psych.lse.ac.uk/psr/.
Vedeler, Janikke Solstad. "Disabled persons’ job interview experiences: stories of discrimination, uncertainty and recognition." Disability & Society 29, no. 4 (November 29, 2013): 597-610. Accessed March 21, 2017. doi:10.1080/09687599.2013.831748.
Velde, Dominique Van de, Piet Bracke, Geert Van Hove, Staffan Josephsson, and Guy Vanderstraeten. "Perceived participation, experiences from persons with spinal cord injury in their transition period from hospital to home." International Journal of Rehabilitation Research, July 2010. Accessed May 12, 2017. doi:10.1097/MRR.0b013e32833cdf2a.
Wedgwood, Nikki. "A Person with Abilities: The Transition to Adulthood of a Young Woman with a Severe Physical Impairment." Young 19, no. 4 (2011): 434-54. Accessed May 09, 2017. doi:10.1177/110330881101900405.
Wehbi, Samantha, and Y. El-Lahib. "The employment situation of people with disabilities in Lebanon: challenges and opportunities." Disability & Society 22, no. 4 (June 11, 2007): 371-82. Accessed May 03, 2017. doi:10.1080/09687590701337736.
Wheeler, Paul. "‘I Count Myself as Normal, Well, not Normal, but Normal Enough’ Men with Learning Disabilities Tell their Stories about Sexuality and Sexual Identity ." Tizard Learning Disability Review 12, no. 1 (January 2007): 16-27. Accessed May 12, 2017. doi:10.1108/13595474200700003.
Wilson-Kovacs, Dana, Michelle K. Ryan, S. Alexander Haslam, and Anna Rabinovich. "‘Just because you can get a wheelchair in the building doesn't necessarily mean that you can still participate’: barriers to the career advancement of disabled professionals." Disability & Society 23, no. 7 (December 03, 2008): 705-17. Accessed April 24, 2017. doi:10.1080/09687590802469198.
"World report on disability." World Health Organization. Accessed June 08, 2017. http://www.who.int/disabilities/world_report/2011/en/
Yee, Michelle Jean. Lived Experiences of Women with Hidden Disabilities: A Phenomenologically Based Study . Master's thesis, University of San Francisco, 2013. SanFrancisco, 2013. 1-167. Accessed May 27, 2016. http://repository.usfca.edu/diss.References
Downloads
Published
How to Cite
Issue
Section
License
Copyright (c) 2018 Ritu Singh, Dr. Geeta Chopra
This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.
