Exploring the Lived Experiences of Adults with Disability

IJDS 2018; Vol. 5 No. 1, May 2018, pp. 10-25 10 ISSN: 2355 – 2158 Cite this as: Singh, Ritu, Chopra, Geeta. ‘Don’t Stare At Me….’ Exploring The Lived Experiences Of Adults With Disability. Indonesian Journal of Disability Studies (IJDS).2018: Vol. 5(1): PP 10 - 25.

‘DON’T STARE AT ME….’ EXPLORING THE LIVED EXPERIENCES OF ADULTS WITH DISABILITY

1*Ritu Singh, 2Geeta Chopra

1, 2Institute of Home Economics, University of Delhi, India

Abstract 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.

Keywords: disability; self-concept; identity; sexuality; participation; employment

1. Introduction terms of attitudinal barriers, negative labelling, and prejudices in their daily encounters with The voices of persons with disabilities is able-bodied counterparts (Baffoe 2013; of paramount significance as they pave the way Cardona 2013; Deepak et al. 2016; Gallagher et for planning of effective policies and to al. 2011; Gartrell 2010; Haggstrom and Lund determine programmes which are as per their 2008; Islam 2008; Koka-Atabey 2013; Lin, needs and effective in ameliorating the Knox, and Barr 2014; Lundberg et al. 2011; difficulties that they face. Going by the Mattevi et al. 2012; Norlyk, Martinsen, and disability anthem ‗Nothing for us without us‘, Kjaer-Petersen 2013; Pande and Tiwari 2011; this paper brings to fore the voices of adults Papadimitriou 2008; Price et al. 2011; Rule and with disabilities and presents their lived Modipa, 2012; Taub, McLorg, and Bartnick et experiences The paper would give a peek into al. 2009; Tijm, Cornielje, and Edusei 2011). the lives of persons with disabilities and how Papadimitriou (2008) reported that individual they perceive and encounter the phenomenon of with disabilities spoke of feeling different and living with a disability. being devalued, as expressed in verbatim of one Living with a disability is beset woman participant: with both positive and negative aspects (Tagaki it‘s as if now that I am in a chair it 2016). Studies have documented that people doesn‘t matter if I am educated, pretty, if I with disabilities are confronted with work, rock climb, or anything. All that matters experiences of discrimination, stigmatization in is that I am different looking. And don‘t get me wrong, I am different! But not in the way that * Corresponding author: Ritu Singh people seem to think of me [as different]. Of [email protected] course I am different. I was going down the Published online at http://IJDS.ub.ac.id/ Copyright © 2018PSLD UB Publishing. All Rights Reserved stairs of my friend‘s apartment building and I

Received, February 26th, 2018 Published, May 23th, 2018 IJDS 2018; Vol. 5 No. 1, May 2018, pp. 10-25 ISSN: 2355 – 2158

fell and broke my back! But, you know, I am 2. Methodology the same Jennifer I was before the accident. It‘s For the review of the literature, electronic still me; it‘s a different body. (Papadimitriou database searches were made by browsing 2008, 699-700) search engines like Google Scholar, Proquest, Research has found that people with Elsevier, Springer, Sage, Science Direct and disabilities encounter experiences of unfriendly, Scopus. The keywords utilized for the search hostile gaze that invade their minds and give included lived experiences, people with them the sense of negative perception about disabilities, self-concept, identity, sexuality, them and make them feel as a non-existent participation, employment; the combination of entity (Baffoe 2013; Gibson et al. 2007; Islam words using ‗and‘ or distinguishing the 2008; Sheldon, Renwick, and Yoshida 2011). keywords by using comma was searched. The Disabled people lamented the fact that it is their inclusion criteria for the studies was the original impairment which is observed first rather than research studies employing qualitative their identity as a person on basis of their involving voices of people with disabilities and abilities (Norlyk et al. 2013; Payne et al. 2016; located in the time period within the range of Kattari 2014; Papadimitriou 2008; Wedgwood 2007-2017. The exclusion criteria involved 2011). excluding the studies that involved quantitative People with disabilities have adopted methods and caregiver‘s perspectives. The strategies to overcome the attitudinal barriers in studies were filtered by reading the abstracts form of stigma or negative perceptions from and if found relevant full article was read and able-bodied and to define meaning in their lives thus included. (Deepak et al. 2016; Gibson et al. 2007; Lin et al. 2014; Loja et al. 2013; Lundberg et al. 2011). 3. Findings Disability is viewed in positive frame and The studies located on the basis of challenges of daily living are appreciated keywords were maintained in the respective (Sheldon et al. 2011; Stromso 2008). The positive side of disability is emphasized as one folders and then read several times and thus participant with acquired impairment shared: summarised in different sections. I no longer think about my disability because I have come to believe that this is part 4. Disability, Self-Concept, and Identity of life. The only thing is to try to learn how to Self-concept is defined as what an live with it. If it has come, it has come, and I individual thinks about the self; basically, cannot do away with it. The only solution is to the beliefs held by an individual regarding live with it, and I never regret that. I only now his or herself and include the person‘s struggle to live positively with my impairment qualities. Identity is defined as knowledge (Stromso 2008, 99-100) of the self that an individual holds which is The World Report on Disability (2011) build-up of values, beliefs and goals (Berk accounts for more than a billion or 15% of the world‘s population living with some form of 1997). disability (WHO 2011). This indicates a huge Self is experienced in a positive number and if we think of prosperous frame by people with learning disabilities developing society we cannot ignore the people across different domains of self-concept with disabilities; instead we should plan to like social, physical, occupational, cultural include the opinions of people with disabilities or psychological self-perceptions. In terms in planning inclusive set up by adhering to the of physical appearance negative self is principles of the United Nations Convention on reported. In terms of social self, participants the rights of Persons with Disabilities identified themselves as supportive, (UNCRPD) that lays thrusts on meaningful friendly and helpful (Pestana 2014). In the participation of people with disabilities (WHO study by Saltes (2013) few participants did 2011). The involvement of people with disabilities makes it necessary to have their feel positive about the impairment in terms voices heard and thus justifying the purpose of of self and finds no issue in disclosing the the review. impairment, as shared by one of them: 11 Cite this as: Singh, Ritu, Chopra, Geeta. ‘Don’t Stare At Me….’ Exploring The Lived Experiences Of Adults With Disability. Indonesian Journal of Disability Studies (IJDS).2018: Vol. 5(1): PP 10 - 25.

IJDS 2018; Vol. 5 No. 1, May 2018, pp. 10-25 ISSN: 2355 – 2158

„I believe in honesty and have no income. Even sexually in bed we can‟t offer problem whatsoever disclosing my a lot.‟ (Gibson et al. 2007, 511) disability‟; and „I don‟t mind because I am In the construction of disabled very confident. I‟m beautiful, educated, identity, bodily differences on account of independent, and very humorous.‟ (Saltes impairment do have a role to play and 2013, 105) identity is entangled in an intersection of The self is not impacted by negative bodily ideals, gender, and impairment. As perceptions held by able-bodied and can be reported by a woman with a physical distinguished from impairment (Loja et al. disability: 2013; Parker and Yau 2012). As noticed in E: What‟s the influence of your body the study by Parker and Yau (2012) where a on the person that you are? e: I think it has woman with spinal cord injury does not let to do with the feminine vanity. I miss that her impairment affects the sense of self as part … The heels and the dresses … she stated: [laughing]. Of the power, of having more „I don‟t really see the wheelchair or freedom of choice. Imagine, I am going out anything like that. But it obviously affects with a group of girlfriends and they are all other people. But I have come to deal with dressed up, with their heels and dresses and that and it‟s their problem, not mine. If they of course, I feel different there. I wished I can‟t be there [because of the disability], could be different. Not as much as in the then I don‟t want them there.‟ (Parker and past when I really got upset. (Loja et al. Yau 2012, 21) 2013, 199) The gaze of able-bodied was found Stromso (2008) found that the lived to impact the self as found in the study of experience of embodied self and identity men with spinal cord injury, as described formation is located in different social by one man: encounters and spaces in which the person „People staring at you. You don‟t is situated and a person can have multiple even know who you are anymore, you know, selves and identifies according to the because it is, it totally changes you from context. As stated by one of the participants what you were to what you are, and people who acquired blindness in her teens who look at you that way too.‟ (Sheldon et al. first internalized the imposed identity given 2011, 311) by able-bodied and was negative, on Embodied self is viewed as negative becoming the mother she experienced a or ingrained in self (Loja et al. 2013; change in self as she expressed: Stromso 2008). Altered body image owing „I used to think of poisoning myself. to disability is found to impact the sense of Right now, when I think of my child, I self as stated by a woman with spinal cord cannot think of poisoning myself because I injury: know I have to live for her, and she is also „I have lost my shape and my figure. there for me. So at least now, she is my So I don‟t really like the way my body consolation‟. (Stromso 2008, 92) looks.‟ (Parker and Yau 2012, 21) Persons with disabilities distanced The internalization of imposed themselves from the social positioning of identities and experiences of exclusion in categorizations as disabled or retarded and the understanding of self is experienced in rejected the label of disability identity the study by Gibson et al. (2007), as imposed on them (Cardona 2013; Le Clair expressed by a man with muscular 2011; Gustavsson, Nyberg, and Westin dystrophy: 2016; Taub et al. 2009; Valentim and Dinis „Well, we have don‟t have anything 2014). to offer. No professional career. No real On-going tension occurs between an inward sense of embracing disability

12 Cite this as: Singh, Ritu, Chopra, Geeta. ‘Don’t Stare At Me….’ Exploring The Lived Experiences Of Adults With Disability. Indonesian Journal of Disability Studies (IJDS).2018: Vol. 5(1): PP 10 - 25.

IJDS 2018; Vol. 5 No. 1, May 2018, pp. 10-25 ISSN: 2355 – 2158

identity and presenting self as a normal in disabled person, positive attitudes play a the public (Bagatell 2007; Cox et al. 2017). significant role. The disabled person should The on-going tension in identity domain as not deny his/her disability; instead, the stated by one participant in his verbatim: difference needs to be celebrated. The “Every day. . . . That was kind of acceptance of disability by a person with what I was taught to do: . . . you are to pass disability would enable to recognize his/her yourself off as normal as much as you can.” capabilities or limitations‘. (Chib 2016) (Cox et al. 2017, 80) The on-going tendency to reclaim Disclosure of disabled identity is ‗person‘ and keeping aside the label of generally avoided by the people with disability is reported in the study of a disabilities; except when the circumstances person with Down syndrome: call in for (Cox et al. 2017; Gustavsson et ‗The Down‟s is a nickname. I put it al. 2016). Persons with disabilities appeared on one side, and then, I am me.‟ „The to be apprehensive in disclosure of their Down‟s is another. I am Rafael‟. disability identity as in the study by Kattari (Almendros and Almendros 2015, 108) (2014) where a disabled woman expressed Life stories of people with her state of apprehension regarding reaction intellectual disability in the study affirm the of prospective partners on knowing about notion of fluidity and flexibility in terms of her disability as she said: ‗self-identities‘ (Gustavsson et al. 2016). „I don‟t want to deﬁne my Lundberg et al. (2014) found that relationship by being someone who‟s identity was negotiated on account of disabled…I don‟t want to scare off someone disabled people‘s participation in adaptive who is able-bodied by talking too much sports and recreation activities as these about my disability, because to them it served as a setting for change in identity, seems really scary.‟ (Kattari 2014, 506) enhancing self-knowledge of the In Cooley‘s concept of the looking- participants as in to do tasks independently, glass self, the notion that individual development of social networks, and develops self from the perceptions of others acquisition of skills that helped them in is well documented in the study done by discovering their selves. As one participant Saltes (2013) as one participant in the study with paraplegia expressed: mentioned that: „It‟s only been through my disability „how they react, or what they may and perhaps my participation in sports and think‟ was an inﬂuential factor in recreation as a disabled person that I determining whether to keep or disclose gained true self confidence…I had come to their impairment‟. (Saltes 2013, 101) learn that I am not my body, I‟m not my Disability is seen as belonging to physically body, there is more to me than them or a part of self-identity (Islam 2008; that.‘ (Lundberg et al. 2011, 214) Saltes 2013). Disability is seen a part of In order to have an enhanced self self-identity as it is explicit from the and to build a positive identity, the people statement made by a man when he was with disabilities tend to negotiate by asked about his reaction on self-disclosure becoming self-reliant (Stromso 2008). To of the impairment: evolve out of a disability identity and „I feel very comfortable because this negative labeling, involvement in is part of who I am‟. (Saltes 2013, 101) continuous work is reported by men with Malini Chib, disability rights and muscular dystrophy (Gibson et al. 2007). author, who has cerebral palsy, asserts strong disability identity. She says that ‗she 5. Disability and Sexuality wants to ―celebrate‖ disability rather than Sexuality is a central aspect of being reject. In the formulation of the identity of a human throughout life and encompasses

13 Cite this as: Singh, Ritu, Chopra, Geeta. ‘Don’t Stare At Me….’ Exploring The Lived Experiences Of Adults With Disability. Indonesian Journal of Disability Studies (IJDS).2018: Vol. 5(1): PP 10 - 25.

IJDS 2018; Vol. 5 No. 1, May 2018, pp. 10-25 ISSN: 2355 – 2158

sex, gender identities, and roles, sexual environment. As expressed by a woman orientation, eroticism, pleasure, intimacy, with congenital blindness that her and reproduction. Sexuality is experienced pregnancy occurred as a surprise to her and expressed in thoughts, fantasies, mother, as she said: desires, beliefs, attitudes, values, behaviors, „Because, she didn‟t understand that practices, roles and relationships. While I will understand the sex because she saw sexuality can include all of these me as the little baby. I know nothing about dimensions, not all of them are always the sex. I know nothing about the boyfriend. experienced or expressed. Sexuality is I know nothing. She was amazed when she inﬂuenced by the interaction of biological, saw me pregnant.‟ (McKenzie 2013, 380) psychological, social, economic, political, Amidst the oppressive and cultural, ethical, legal, historical, religious discriminative domains of sexual culture, in and spiritual factors (WHO 2002). the study by Liddiard (2014) people with People with disabilities are seen as disabilities reported to be engaged in either sexually inactive or like sex too much ‗work‘ as mentioned in the study in order to or asexual beings and owing to such myths affirm their sexuality; as expressed by a they are deprived of sexual education woman with congenital impairment: (Hanass and Hancock 2009; Peta et al. „being in a relationship is a 2016). The issue of sexual activity or constant reassurance in my worth as a bearing children is discouraged for the person and a woman‟. (Liddiard 2014, 120) persons with disabilities and thus they are The sexual self of the people with deprived of sex education by their families disabilities is either not recognized or and sexual knowledge is considered restrained by societal attitudes (Sakellariou potentially harmful or unnecessary 2012). Family interference was reported by (McKenzie 2013). The lack of sexual the disabled people as the reason for denial counselling or no education in terms of of sexual autonomy or sexual engagement physiological or emotional aspects of and thus their choice to indulge in dating or sexuality was identified by women with sexual contact was limited (Bernert 2011; women disabilities. They wanted health Mc Kenzie 2013). The restriction in matters professionals to bring up issues of sexuality of sexuality with respect to dating was and to be open about it (Parker and Yau expressed by women with a mild 2012). intellectual disability that her date nights Persons with disabilities denied and were being supervised by agency people so challenged the prevalent myth of asexuality she didn‘t have sex, as she stated: as found in the research (McKenzie 2013; I have to be around where staff can Payne et al. 2016; Peta et al. 2016; Wheeler make sure everythin‟s goin‟ OK. They come 2007). In relation to this myth of asexuality, back and forth and check up on me, and men with learning disabilities affirmed that make sure I don‟t do anything wrong. Like learning disability in no way marks them as fool around the wrong way. Can‟t have sex. asexual or labels them with no sexual urges; If you do that stuff, he‟ll have to go home, as one participant expressed: and I‟ll have to go to my room and spend „I do get a, a hard on‟. (Wheeler the rest of the night there. (Bernert 2011, 2007, 20) 136) McKenzie (2013) found that people with Peta et al. (2016) found that women disabilities affirm their worth by being with disabilities act as active agents in engaged in intimate relations, getting expressing their sexuality by being married, bearing children and thus breaking dynamically involved in intimate relations, the shackles of deep-rooted myths which asserting their sexuality as not just sex were confronted by the participants in their object what males assume, but affirming

14 Cite this as: Singh, Ritu, Chopra, Geeta. ‘Don’t Stare At Me….’ Exploring The Lived Experiences Of Adults With Disability. Indonesian Journal of Disability Studies (IJDS).2018: Vol. 5(1): PP 10 - 25.

IJDS 2018; Vol. 5 No. 1, May 2018, pp. 10-25 ISSN: 2355 – 2158

their choice by demanding love from their be able to talk about my body in a really partners or using of herbs on vagina to honest and direct way has led to increased enhance eroticism or bearing children and, sexual satisfaction. (Kattari 2014, 506) thus challenging the stereotypes about The urge to be recognized beyond the disabled women. The desire to be impairment and to divert the attention of independent in choosing partners, engaging onlooker from their bodies as they in intimate relations or maintaining employed certain tactics is reported in the abstinence was reported among women study by Payne et al. 2016; as the woman with intellectual impairment. Despite stated that by wearing bright red shoes she restrictions on sexual activity, these women was able to divert the attention of viewer exhibit protective behaviours to engage in from her disability and the process began sexual encounters and were aware of with complimentary note as she said: utilising protective means like condoms, „The conversation begins with oral contraceptives (Bernert 2011). something complimentary – not what‟s Sakellariou (2012) found that men who wrong with you, but something that‟s nice acquired spinal injury negotiated sexuality about you – rather than understanding the as they adapted their ways in expressing problem before the person.‟ (Payne et al. sexual expression and the use of 2016, 1036) technologies in order to take care of their The barriers in terms of sexuality due self. Parker and Yau (2012) found the role to changes in body image post injury, of adjustment and adaptation in managing difficulty in finding a prospective partner sexual expressions by the stimulation of and maintaining fulfilling intimate hypersensitive or non-genital areas, by relationships, limited sexual knowledge or being creative or having open lack of sexual counseling, negative communication to talk about needs and perceptions of a non-disabled and lack of limitations in order to accommodate sexual spontaneity in sexual activity is needs of the self and partner is documented documented in the study by Parker and Yau by women with spinal cord injury. As one 2012. To prepare oneself for sexual activity participant mentioned: and to manage the arrangements prior to „We do a fair bit of experimenting…it sexual activity is shared by a woman with keeps it fairly interesting. It does not just spinal cord injury: have to be intercourse.‟ (Parker and Yau The whole spontaneity has to go out 2012, 19) the door because everything is planned…I Kattari (2014) found that women with can‟t get up and run to him to give him a disabilities reported the role of partners in cuddle or if he has go this back to me terms of communicating with them on somewhere I can‟t just go up to him and needs around sexuality and disability that give him a cuddle and a kiss. I can come up aids in enhancing sexual satisfaction and to him, but it is predictable, because I am adaptations in terms of sexual expression there. So it is not a surprise and it is not and to be ‗kinky‘ in expressing themselves spontaneous. (Parker and Yau 2012, 22) in sexual interaction. As one woman expressed the role of partner connection that channelized her intimacy as she said: …if I‟m totally upfront with a partner, 6. Disability and Participation which I am now with a romantic partner, I The International Classification of think my sexual satisfaction increases, not Functioning, Disability, and Health (ICF) only because they understand me, and my describes participation as ‗involvement in body, and what my limits are, and that they life situations‘ or as ‗the lived experiences‘ can change, but also just that conﬁdence to of people in the actual context in which

15 Cite this as: Singh, Ritu, Chopra, Geeta. ‘Don’t Stare At Me….’ Exploring The Lived Experiences Of Adults With Disability. Indonesian Journal of Disability Studies (IJDS).2018: Vol. 5(1): PP 10 - 25.

IJDS 2018; Vol. 5 No. 1, May 2018, pp. 10-25 ISSN: 2355 – 2158

they live and does not discriminate between participant appreciate the peer support that activity and participation in its coding resulted out of participation in recreation (WHO 2001). activity as he said: Participation is viewed as a set of I think it has given me the knowledge values where individuals are free to choose that, hey you are not the only one in this activities in which sense of being valued is situation. There are others in this situation, felt, feeling of personal growth, trust and a perhaps even worse than you, or better than person feels a sense of control as expressed you, but there are others experiencing this by the individuals with spinal cord injury challenge in life along with you. The (Velde et al. 2010). In the study by Ripat support system is huge! And just knowing and Woodgate (2012), people with spinal there are others out there you can lean on cord injury described participation as an is a great thing. (Lundberg et al. 2011, 213) ‗experience‘ instead of defining it on the The experience of participation is felt basis of type or number of activities. when things were done independently with Participation is seen as a settlement in terms satisfaction in accordance with own of a body-environment interface, as in to preferences in an environment where the feel included or belonged to activity or to individuals felt belonged to and valued, and have a sense of control over activity and to also by being part of those activities where feel accomplished. As one participant they advised and received contribution in expressed participation to be reciprocal as lieu of it as reported by people with spinal she said: cord injury (Haggstrom and Lund 2008). „it‟s dealing with ways or possibly Gibson et al. (2007) discovered that the improving your community and enriching, men with muscular dystrophy have placed not only your own life, but other people‟s.‟ significance in being ‗out of home‘ in terms (Ripat and Woodgate 2012, 911) of meeting a friend, going for a walk, People with disabilities marked their visiting relatives or being on their own in a presence in participation by visiting the neighborhood. Tagaki (2016) found that to places of worship, recreational centers, and be involved in activities like work be it other contexts. The most preferred forms of social or welfare activities, child rearing, participation reported were self-chosen and leisure activities was accounted as activities with a higher degree of autonomy, meaningful in the lives of the people with in spaces where a sense of membership and disabilities and a sense of fulfilling was to feel belonged is felt. Contexts of achieved. People with disabilities reported participation were given importance where meaningful aspects of participation as their the people with disabilities could escape participation in adaptive sports and stares of the public, could feel comfortable recreation activities has instilled in them the and open up their inner selves (Milner and sense of independence, feeling of being Kelly 2009). Participation is preferred normal as they too can do tasks, among people with disabilities to have development of social networks, feeling of commonness of beliefs (Milner and Kelly accomplishment on completion of tasks 2009; Taub et al. 2009). Lundberg et al. which further their confidence level and (2011) has discovered that participation in thus giving them sense of being at par as sports and recreation activities by people their non-disabled counterparts. As with disabilities has resulted in challenging expressed by a woman with cerebral palsy their negative self-perceptions, as they who talks of success as meaningful reported building of social support, to feel outcome of participation: normal, and compared themselves “You are seeing success. You are positively from others who were non- accomplishing goals. You are doing disabled and sensed freedom; as one

16 Cite this as: Singh, Ritu, Chopra, Geeta. ‘Don’t Stare At Me….’ Exploring The Lived Experiences Of Adults With Disability. Indonesian Journal of Disability Studies (IJDS).2018: Vol. 5(1): PP 10 - 25.

IJDS 2018; Vol. 5 No. 1, May 2018, pp. 10-25 ISSN: 2355 – 2158

something, so your confidence level is 2009). As one participant summed up how increasing”. (Lundberg et al. 2011, 213) she deters her social engagements owing to Participation, be it in social space or physical barriers as she says: in other domains of daily living, was found I‟ve tried to have a normal social to be meted out by the barriers, which life, but … taking the wheelchair in and out include environmental in terms of social, of places, it‟s not a very pleasant thing to cultural or attitudinal, in terms of negative do – the fact of inaccessibility … . I never perceptions or stereotypes, prejudices, really ever went to parties because of the stigmatized notions or discriminatory labels people running in and out … . I might break from a non-disabled, inaccessible built a bone or I might get hit or shoved environment, inaccessible transportation or accidentally. (Taub et al. 2009, 206) toilets or on part of a personal or activity Haggstrom and Lund (2008) found limitations is identified by the disabled that disabled people devised strategies to persons (Baffoe 2013; Deepak et al. 2016; enhance participation by doing things in Gallagher et al. 2011; Haggstrom and Lund novel ways, to take up the voluntary task or 2008; Islam 2008; Loja et al. 2013; Milner doing things for others or being part of and Kelly 2009; Ripat and Woodgate 2012; activities that create a sense of Stromso 2008; Tijm et al. 2011). belongingness in them. Stromso (2008) Inaccessibility in terms of the built found that barriers to participation are environment acted as a barrier to negotiated by the impaired people in order participation in terms of socializing with to be a part of the inclusive place. As one friends or family as reported by people with person with a walking impairment in the a spinal cord injury (Price et al. 2011). process of negotiation of relatives‘ Stromso (2008) found that the physical expectations of his disabled body stated: environment in terms of buildings, „My relatives thought me incapable transport, assistive devices, safety, traffic of the work necessary. I showed them by etc. has posed barriers for opportunities of going to the garden and dig with them‟. participation in the society as expressed by (Stromso 2008, 79) people with disabilities. Loja et al. (20130 found that participation in social life was 7. Disability and Employment thwarted on account of an unfriendly gaze Employment is a crucial event in the that highlighted the negative discourses of life of an individual that makes the person an able-bodied as summed up by one self-reliant, economic independent, participant: productive, imparts a sense of self-worth I avoid going to public places. E: and a way to overcome from the May I ask why? e: Maybe I haven‟t stigmatized labels that are accorded on the adjusted well yet. I am better now because basis of disability as stated by disabled until now I‟ve been running from those people in the study (Cunnah 2015; places because of the gazes. […] E: If there Lamichhane 2012). Higher education as weren‟t the gazes, would it be easier for expressed by disabled people is the route to you to go out? e: Yes, if we were simply gainful employment and better socio- ignored and only seen as normal people. I economic status (Lamichhane 2012). would go out much more. (Loja et al. 2013, Across the globe, people with 196) disabilities are found to be self-employed as Social life too is beset with barriers entrepreneurs, farmers, teachers, doctors, present in the physical built environment technicians or assistants. People with such as inaccessible spaces or toilets or disabilities are capable of doing any work attitudinal ones or owing to physical as their non-disabled counterparts, provided limitations (Price et al. 2011; Taub et al. the right atmosphere is provided to them.

17 Cite this as: Singh, Ritu, Chopra, Geeta. ‘Don’t Stare At Me….’ Exploring The Lived Experiences Of Adults With Disability. Indonesian Journal of Disability Studies (IJDS).2018: Vol. 5(1): PP 10 - 25.

IJDS 2018; Vol. 5 No. 1, May 2018, pp. 10-25 ISSN: 2355 – 2158

Lower employment and higher El-Lahib, 2007). The inaccessible unemployment rates respectively is environment was found to be one of the experienced among people with disabilities reasons for not applying for the jobs, as both in developed and developing nations. expressed explicitly in verbatim of one of A lower rate of labor market participation is the participants: significant route through which disability „I would not apply for a job in an gives way to poverty (WHO 2011). inaccessible building; I have only applied The voices of people with disabilities for jobs that have been in accessible in the studies that are reviewed do mention buildings‟. (Newton et al. 2007, 615) the barriers encountered in maintaining and Bualar (2014) found that lack of securing jobs on the whole. Disability is proper infrastructure at a workplace, lack of one of the prominent factors and is disabled friendly toilets or transportation is described as an obstacle in securing and well summed by women with physical maintaining employment. The employers disabilities. As stated by one woman who are found to have preconceived notions that had quit her job because of lack of disabled persons with disabilities cannot do friendly toilet, as she said: productive work. The labelling of disability I tried to adjust myself to the office thus tends to negate the skills and potential layout but taking the wheelchair in and out of the employees with disabilities tend to be of the toilet was not easy. When in the ignored (Bualar 2014; Enoch et al. 2016; toilet, I could not manage it on my own. Punch, Hyde, and Power 2007; Shier, Sometimes, I needed help but I felt ashamed Graham, and Jones 2009; Vedeler 2014; of my body. The office had very little money Wilson-Kovacs et al. 2008; Wehbi and El- to reconstruct the toilet. I told this to my Lahib 2007). Being disabled is one barrier family and they asked me to stop working. that acts as a stumbling block and identified (Bualar 2014, 189) as a reason for workplace discrimination by In terms of built environment, an an employer as stated by one participant: example of good practice is found where I guess the biggest thing is, when I certain features of the public sector go to the interview I don‟t usually let the buildings did help persons with disabilities, employer know that I‟m in a chair. ‟Cause I as one participant expressed: find that if I do, it might scare them off, or it „The hospital is great. Getting might give them a reason to say, „don‟t through clinics is fine, getting around the bother coming in‟. I did experience that hospital is fine, toilets and lifts great.‘ with one person. … I had asked the person (Newton et al. 2007, 617) whether the workplace was wheelchair Attitudinal barriers in terms of accessible. And they said that they would negative attitudes of employers, get back to me and they never did. (Shier et discrimination by employers or rude al. 2009, 67) behaviour of co-workers based on the Barriers in terms of inaccessible built impairments is cited as another hassle in environment viz., poorly constructed roads, securing and maintaining gainful lack of disabled friendly toilets, lack of employment (Bualar 2014; Cunnah 2015; transportation, inaccessible buildings and Gartrell 2010; Enoch et al. 2016; Punch et poor infrastructure at workplaces are types al. 2007; Shier et al. 2009; Vedeler 2014; of obstacles that pose hindrance in seeking Wehib and El-Lahib 2007). In terms of and maintaining jobs for people with attitudinal barriers, women with physical disabilities (Bualar 2014; Gartrell 2010; disabilities reported that employers focused Enoch et al. 2016; Kim and Williams 2012; on their impairments and physical Lamichhane 2012; Newton, Ormerod, and appearance. As one wheelchair bound Thomas 2007; Shier et al. 2009; Wehbi and woman while planning to apply for a job

18 Cite this as: Singh, Ritu, Chopra, Geeta. ‘Don’t Stare At Me….’ Exploring The Lived Experiences Of Adults With Disability. Indonesian Journal of Disability Studies (IJDS).2018: Vol. 5(1): PP 10 - 25.

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for counter clerk, felt excluded as she For the past two years, I have been described: asking for accommodations in the form of a „When I got in and asked for an note taker. I have not gotten any because, application form, a man came to me and you know, while they just assume that since told me that I might not be fit for office they provide the schools with equipment, requirements because his company prefers we, the teachers, could access that non-disabled employees. Then I wheeled equipment … Last year, two of my myself out, feeling out of place.‟ (Bualar colleagues were able to get note-takers, but 2014, 192) I didn‟t. (Kim and Williams 2012, 847) Personal limitations on part of their health Women with disabilities are more condition or illness is another reason which prejudiced against than men in employment acts as a barrier in continuing job as quoted sector besides the barriers faced in terms of by people with disabilities (Bualar 2014; negative attitudes or inaccessibility issues. Enoch et al. 2016; Kim and Williams, 2012; Bualar (2014) found that women with Shier et al. 2009; Wehbi and El-Lahib disabilities reported that inaccessible job 2007). The issues of inaccessible work information was another reason that kept environment too can pose a problem in them aloof from seeking work; as most of continuing work as summed up by a the advertisements were on bulletin boards participant who in spite of excelling in in radio stations or those of government workplace was asked to leave as she buildings which are located in far flung mentioned: places. The family is cited as a reason for My team moved office at the their non-participation in labour market as beginning of September so I have not been their family feel over protective for these able to work for three and a half months, women or in case of women with and there is no sign of things being right intellectual disability the fear of these any time soon. Rather than deal with the women getting injured or incapable of access issues my employer has tried to doing work as assumed by the family of a retire or redeploy me. They are only doing disabled woman (Bualar 2014; Wehbi and this because I have mobility impairment. El-Lahib 2007). The family keeps women The Occupational Health people have said bound, as expressed by a woman who has a I am not sick and my employer has had to joint defect and said that her family appears acknowledge my excellent record of not to be over protective which is explicit in her going off sick. Yet I am now off sick with my statement: employer‟s agreement, even though I am My husband and sons are very not sick. (Newton et al. 2007, 616) worried about me when I ask them if I can Wilson-Kovacs et al. (2008) found work as a data recording employee at one that people with disabilities do encounter of the local telecom companies. They do not lack of support from the organization in feel comfortable letting me work outside terms of providing them the opportunities our house. They fear that I might suffer to prove their potential or make the from multiple injuries which I might workplace adjustments or lack of experience if working outside. They knowledge regarding disability, thus strongly confirm that I should be at home. affecting the career advancement of (Bualar 2014, 193) disabled workers. Difficulties were Employers‘ positive perception encountered in terms of seeking regarding hiring of people with disabilities accommodations at the workplace (Kim and too was encountered in the study of job Williams 2012; Punch et al. 2007. The interview experiences by Vedeler (2014). same plight is expressed by one participant: As shared by a participant who did disclose her disability in the application and

19 Cite this as: Singh, Ritu, Chopra, Geeta. ‘Don’t Stare At Me….’ Exploring The Lived Experiences Of Adults With Disability. Indonesian Journal of Disability Studies (IJDS).2018: Vol. 5(1): PP 10 - 25.

IJDS 2018; Vol. 5 No. 1, May 2018, pp. 10-25 ISSN: 2355 – 2158

mentioned that employer first focused on her ability as she said: He raised a few questions 8. Conclusion concerning „what do you think we should The voices of adults with disabilities do to accommodate your disability, like in present an overview of their experiences of case of a fire? We have offices on the fifth living with a disability and how they navigate floor, so, are there measures we can the course of daily encounters of negative implement without invading you in a hegemony created by able-bodied. In terms of their experience of self and identity amidst the sense?‟ […] [they] had like an socially imposed discourses of stigmatization, uncomplicated relationship to it [the exclusion and marginalization; the responses impairment], not like, „oh, you are varied among people with disabilities as some disabled!‟ (Vedeler 2014, 606) tend to internalize the discriminatory beliefs In the above example, positive held by non-disabled and accepted the imposed experience is felt by the job aspirant and categorizations, while others appeared to also the employer appeared to be keeping embrace their disability identity and felt at self in aspirant‘s shoes as the employer peace while disclosing about their impairment, talked about what accommodations an and few others maintained self and impairment aspirant expects. as two separate identities. By and large it was The dilemma in terms of disclosure found that the negative perceptions of non- disabled did have an impact on their identity of a disability is found among the people and due to the stereotypes attached to the label with disabilities; as if mentioned in the of disability, the disabled people tend to resume it might amount to losing of job dissociate from disability identity or indulge in opportunity or confronting the attitudinal practices that shield them from being tagged as barrier by an employer in job seeking disabled. To conclude the voices of adults with process (Shier et al. 2009; Vedeler 2014; disabilities with regard to sexuality, again the Yee 2013). common thread appeared to be of attitudinal To minimize the effects of barriers held by non-disabled that view disabled discrimination, people with disabilities did people as asexual and the findings affirm the plan coping strategies in terms of experiences of disabled people being labelled as withdrawing themselves from people whom asexual and how they fight such stereotype. The stories depicted an altogether different picture they believe would worsen their plight, next whereby disabled people were found to be a they rely on government initiative and dynamic agent in a sexual activity as they policies (Enoch et al. 2016). Shier et al. adapted their modes of sexual expression and (2009) mentioned the strategies to enhance embraced the partner support and process of work participation which came up from being upfront in discussing their needs about voices of the people with disabilities in the sexuality. In order to resist the normative study that the employers and corporate typology of asexuality myth, at times being in sector people need to be made aware and relationship is attached to their sense of self- educated about the understanding of worth. Participation was accorded importance persons with disabilities in order to create by disabled people as it helped them in supportive work environment. In order to development of social support, helped them fighting the odd system values and avenue for evade the discrimination and negative creating meaning in lives. But the disabling attitudes, they maintain a feeling of stand is of an environment inhabited by the perseverance or are humorous as told by disabled people that acts as a hurdle in fuelling one participant: their lives to ecstasy and to be included; the „I try to be funny about it, when I say, barriers in terms of built environment and „yeah, I have a seizure disorder‟, you know. prejudices that not only hamper their Yeah, just don‟t put any flashing lights in front community or social participation but they tend of me; otherwise I‟ll start doing the funky to stretch their fangs of venom in employment chicken for you.‟ (Shier et al. 2009, 71) sector and thus disabling the work competence 20 Cite this as: Singh, Ritu, Chopra, Geeta. ‘Don’t Stare At Me….’ Exploring The Lived Experiences Of Adults With Disability. Indonesian Journal of Disability Studies (IJDS).2018: Vol. 5(1): PP 10 - 25.

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of the people with impairments Though Cardona, Gordon C. "Overcoming disabling physical limitation is another thing which barriers: disability and attitudes to disability imposed limitations in activities of daily living; within the Maltese context: an insider‘s but on the whole it is the societal dynamics perspective." Disability & Society 28, no. 2 deep rooted in normative postulates that gives (January 16, 2013): 279-84. Accessed March no room to disabled people and thus creates a 21, 2017. doi:10.1 world of exclusion and apathy for person with 080/09687599.2012.753186. disability. Chib, Malini. "Celebrating Disabilities: Author There is a need to consider the voices Malini Chib Sheds New Light on Disability of persons with disability when designing through Her Book." The Better India (web log), policies and programmes to build an accessible December 09, 2016. Accessed June 01, 2017. world for them. http://www.thebetterindia.com/77745/malini-

chib-discuss-why-celebrate-disability/. References Cox, Bradley E., Kerry Thompson, Amelia Anderson, Amanda Mintz, Taylor Locks, Calderón-Almendros , Ignacio, and Rafael Lindee Morgan, Jeffrey Edelstein, and Abigail Calderón-Almendros. "‗I open the coffin and Wolz. "College Experiences for Students with here I am‘: disability as oppression and Autism Spectrum Disorder: Public Identity, education as liberation in the construction of Public Disclosure, and Institutional Support." personal identity." Disability & Society 31, no. Journal of College Student Development 58, 1 (February 12, 2016): 100-15. Accessed March no. 1 (January 2017): 71-87. Accessed March 21, 2017. 21, 2017. doi:10.1353/csd.2017.0004. doi:10.1080/09687599.2015.1133400. Cunnah, Wendy. "Disabled students: identity, Baffoe, Michael. (2013). Stigma, inclusion and work-based placements." Discrimination & Marginalization: Gateways to Disability & Society 30, no. 2 (January 26, Oppression of Persons with Disabilities in 2015): 213-26. Accessed March 21, 2017. Ghana, West Africa . Journal of Educational doi:10.1080/09687599.2014.996282. and Social Research 3, no. 1 (January 2013): Deepak, Sunil, Jayanth Kumar, Cheluvaraju 187-98. Accessed April 08, 2017. doi: Sivarama, Ramesh Giriyappa, and Parthipan 10.5901/jesr.2013.v3n1p187. Ramaswamy. "Life stories of persons with Bagatell, Nancy. (2007). Orchestrating voices: intellectual disabilities in Mandya District, autism, identity and the power of discourse. India." Knowledge Management for Disability & Society 22, no. 4 (June 11, 2007): Development Journal, 2016, 8-24. Accessed 413-26. Accessed May 02, 2017. February 26, 2017. http://journal.km4dev.org/. doi:10.1080/09687590701337967. "Defining sexual health." WHO. Accessed Berk, Laura E. (1997). Self and Social August 11, 2017. Understanding." In Child Development. 4th ed. http://www.who.int/reproductivehealth/topics/s United States of America exual_health/sh_definitions/en/. Bernert, Donna J. (2010). Sexuality and Enoch, Acheampong, Anthony Kwaku Edusei, Disability in the Lives of Women with Okyere Paul, Akohene Kofi Mensah, Rose Intellectual Disabilities. Sexuality and Odotei Adjei, and Emmanuel Appiah- Disability 29 (December 09, 2010): 129-41. Brempong2. "―We are not getting jobs‖: Job Accessed March 21, 2017. doi: seeking Problems of People with Disability and 10.1007/s11195-010-9190-4. Coping Strategies adopted in an Urban Traditional Community in Ghana." Disability, Bualar, Theeraphong. "Barriers to employment: CBR and Inclusive Development 27, no. 1 voices of physically disabled rural women in (2016): 109-25. Accessed February 26, 2017. Thailand." Community, Work & Family 17, no. doi: 10.5463/DCID.v27i1.499. 2 (June 08, 2013): 181-99. Accessed March 21, 2017. doi:10.1080/13668803.2013.806125. Gallagher, Pamela, Mary-Ann O'Donovan, Anne Doyle, and Deirdre Desmond. "Environmental barriers, activity limitations 21 Cite this as: Singh, Ritu, Chopra, Geeta. ‘Don’t Stare At Me….’ Exploring The Lived Experiences Of Adults With Disability. Indonesian Journal of Disability Studies (IJDS).2018: Vol. 5(1): PP 10 - 25.

IJDS 2018; Vol. 5 No. 1, May 2018, pp. 10-25 ISSN: 2355 – 2158

and participation restrictions experienced by 32 (September 25, 2014): 499-513. Accessed people with major limb amputation." March 21, 2017. doi: 10.1007/s11195-014- Prosthetics and Orthotics International 35, no. 3 9379-z. (2011): 278-84. Kim, Mikyong Minsun, and Brenda C. doi:10.1177/0309364611407108. Williams. "Lived employment experiences of Gartrell, Alexandra. "‗A frog in a well‘: the college students and graduates with physical exclusion of disabled people from work in disabilities in the United States." Disability & Cambodia." Disability & Society 25, no. 3 Society 27, no. 6 (April 30, 2012): 837-52. (April 28, 2010): 289-301. Accessed May 09, Accessed March 21, 2017. 2017. doi: 10.1080/09687591003701207. doi:10.1080/09687599.2012.673081. Gibson, Barbara E., Nancy L. Young, Ross E.g. Koca-Atabey, Müjde. "A personal validation of Upshur, and Patricia Mckeever. "Men on the the social nature of disability: different margin: A Bourdieusian examination of living environments, different experiences." Disability into adulthood with muscular dystrophy." & Society 28, no. 7 (August 20, 2013): 1027- Social Science & Medicine 65, no. 3 (2007): 031. Accessed March 21, 2017. 505-17. Accessed May 12, 2017. doi:10.1080/09687599.2013.820535. doi:10.1016/j.socscimed.2007.03.043. Lamichhane, Kamal . "Employment situation Gustavsson, Anders, Catarina Nyberg, and and life changes for people with disabilities: Charles Westin. "Plurality and continuity— evidence from Nepal." Disability & Society 27, Understanding self-identity of persons with no. 4 (March 22, 2012): 471-85. Accessed intellectual disability." European Journal of February 20, 2017. Disability Research 10 (October 15, 2016): doi:10.1080/09687599.2012.659462. 310-26. Accessed February 23, 2017. Le Clair, Jill M. "Transformed identity: from doi:10.1016/j.alter.2016.06.003. disabled person to global Paralympian." Sport Häggström, Anna, and Maria Larsson Lund. in Society 14, no. 9 (December 07, 2011): "THE COMPLEXITY OF PARTICIPATION 1116-130. Accessed March 21, 2017. IN DAILY LIFE: A QUALITATIVE STUDY doi:10.1080/17430437.2011.614768. OF THE EXPERIENCES OF PERSONS Liddiard, Kirsty. "The work of disabled WITH ACQUIRED BRAIN INJURY." J identities in intimate relationships." Disability Rehabil Med 40:89-95. Accessed March 21, & Society 29, no. 1 (May 08, 2013): 115-28. 2017. doi: 10.2340/16501977-0138. Accessed March 21, 2017. Hanass-Hancock, Jill. "Interweaving doi:10.1080/09687599.2013.776486. Conceptualizations of Gender and Disability in Lin, Hsiu-Ching, Marie Knox, and Jennieffer the Context of Vulnerability to HIV/AIDS in Barr. "A grounded theory of living a life with a KwaZulu-Natal, South Africa." Sexuality and physical disability in Taiwan." Disability & Disability 27, no. 1 (2008): 35-47. Accessed Society 29, no. 6 (2014): 968-79. Accessed April 14, 2017. doi:10.1007/s11195-008-9105- March 21, 2017. 9. doi:10.1080/09687599.2014.902361. "International Classification of Functioning, Loja, Ema, Maria Emília Costa, Bill Hughes, Disability and Health (ICF)." World Health and Isabel Menezes. "Disability, embodiment Organization. 2001. Accessed August 12, 2017. and ableism: stories of resistance." Disability & http://www.who.int/classifications/icf/en/. Society 28, no. 2 (August 01, 2012): 190-203. Islam, Zoebia. "Negotiating identities: the lives Accessed May 01, 2017. of Pakistani and Bangladeshi young disabled doi:10.1080/09687599.2012.705057. people." Disability & Society 23, no. 1 Lundberg, Neil R., Stacy Taniguchi, Bryan P. (December 05, 2007): 41-52. Accessed March McCormick, and Catherine Tibbs. "Identity 21, 2017. doi:10.1080/09687590701725625. Negotiating: Redefining Stigmatized Identities Kattari, Shanna K. "Sexual Experiences of through Adaptive Sports and Recreation Adults with Physical Disabilities: Negotiating Participation among Individuals with a with Sexual Partners." Sexuality and Disability 22 Cite this as: Singh, Ritu, Chopra, Geeta. ‘Don’t Stare At Me….’ Exploring The Lived Experiences Of Adults With Disability. Indonesian Journal of Disability Studies (IJDS).2018: Vol. 5(1): PP 10 - 25.

IJDS 2018; Vol. 5 No. 1, May 2018, pp. 10-25 ISSN: 2355 – 2158

Disability." Journal of Leisure Research 43, no. 10, 2011): 15-27. Accessed April 13, 2017. doi: 2 (2011): 205-25. Accessed April 25, 2017. 10.1007/s11195-011-9222-8. Mattevi, Betina S., Juliana Bredemeier, Cláudia Payne, Deborah Ann, Huhana Hickey, Huhana Fam, and Marcelo P. Fleck. "Quality of care, Nelson, Katherine Rees, Henrietta Bollinger, quality of life, and attitudes toward disabilities: and Stephanie Hartley. "Physically disabled perspectives from a qualitative focus group women and sexual identity: a PhotoVoice study in Porto Alegre, Brazil." Revista study." Disability & Society 31, no. 8 Panamericana de Salud Pública 31, no. 3 (September 29, 2016): 1030-049. Accessed (2012): 188-96. Accessed May 1, 2017. March 21, 2017. doi:10.1590/s1020-49892012000300002. doi:10.1080/09687599.2016.1230044. McKenzie, Judith Anne. "Disabled people in Pestana, Claudio. "Exploring the self-concept of rural South Africa talk about sexuality." adults with mild learning disabilities." British Culture, Health & Sexuality 15, no. 3 Journal of Learning Disabilities 43 (2014): 16- (December 11, 2012): 372-86. Accessed April 23. Accessed March 21, 2017. 12, 2017. doi: 10.1080/13691058.2012.748936 doi:10.1111/bld.12081. . Peta, Christine , Judith McKenzie, Harsha Milner, Paul, and Berni Kelly. "Community Kathard, and Adelene Africa. "We are Not participation and inclusion: people with Asexual Beings: Disabled Women in disabilities defining their place." Disability & Zimbabwe Talk About Their Active Sexuality." Society 24, no. 1 (January 15, 2009): 47-62. Sexuality Research and Social Policy, Accessed February 20, 2017. November 02, 2016. Accessed February 23, doi:10.1080/09687590802535410. 2017. doi: 10.1007/s13178-016-0266-5. Newton, Rita, Marcus Ormerod, and Pam Price, Pollie, Stephanie Stephenson, Lesha Thomas. "Disabled people's experiences in the Krantz, and Kristine Ward. "Beyond My Front workplace environment in England ." Equal Door: The Occupational and Social Opportunities International 26, no. 6 (2007): Participation of Adults With Spinal Cord Injury 610-23. Accessed May 03, 2017. ." Occupation, Participation and Health 31, no. doi:10.1108/02610150710777079. 2 (2011). Accessed May 12, 2017. doi:10.3928/15394492-20100521-01. Norlyk, Annelise, Bente Martinsen, and Klaus Kjaer-Petersen. "Living with clipped wings— Punch, Rene ´e , Merv Hyde, and Des Power. Patients‘ experience of losing a leg." "Career and Workplace Experiences of International Journal of Qualitative Studies on Australian University Graduates Who Are Deaf Health and Well-being 8, no. 1 (October 14, or Hard of Hearing." Journal of Deaf Studies 2013): 21891. Accessed April 29, 2017. and Deaf Education 12, no. 4 (April 29, 2007): doi:10.3402/qhw.v8i0.21891. 504-17. Accessed May 02, 2017. doi:10.1093/deafed/enm011. Pande, Namita, and Shruti Tewari. "Understanding Coping with Distress due to Ripat, JD, and RL Woodgate. "Self-perceived Physical Disability ." Psychology and participation among adults with spinal cord Developing Societies 23, no. 2 (2011): 177-209. injury: a grounded theory study." Spinal Cord Accessed April 16, 2017. doi: 50 (July 03, 2012): 908-14. Accessed May 12, 10.1177/097133361102300203. 2017. doi:10.1038/sc.2012.77. Papadimitriou, Christina. "Becoming Rule, Peter, and Taadi Ruth Modipa. "―We en‐wheeled: the situated accomplishment of Must Believe in Ourselves‖: Attitudes and re‐embodiment as a wheelchair user after spinal Experiences of Adult Learners With Disabilities cord injury." Disability & Society 23, no. 7 in KwaZulu-Natal, South Africa." Adult (December 03, 2008): 691-704. Accessed April Education Quarterly 62, no. 2 (2012): 138-58. 08, 2017. doi:10.1080/09687590802469420. Accessed April 25, 2017. doi:10.1177/0741713611400303. Parker, Malorie G., and Matthew K. Yau. "Sexuality, Identity and Women with Spinal Sakellariou, Dikaios. "Sexuality and Disability: Cord Injury." Sexuality and Disability 30 (July A Discussion on Care of the Self." Sexuality 23 Cite this as: Singh, Ritu, Chopra, Geeta. ‘Don’t Stare At Me….’ Exploring The Lived Experiences Of Adults With Disability. Indonesian Journal of Disability Studies (IJDS).2018: Vol. 5(1): PP 10 - 25.

IJDS 2018; Vol. 5 No. 1, May 2018, pp. 10-25 ISSN: 2355 – 2158

and Disability 30 (July 01, 2011): 187-97. Representations 23 (2014): 24.1-4.17. Accessed Accessed March 21, 2017. doi: February 22, 2017. 10.1007/s11195-011-9219-3. http://www.psych.lse.ac.uk/psr/. Saltes, Natasha. "Disability, identity and Vedeler, Janikke Solstad. "Disabled persons‘ disclosure in the online dating environment." job interview experiences: stories of Disability & Society 28, no. 1 (June 12, 2012): discrimination, uncertainty and recognition." 96-109. Accessed March 21, 2017. Disability & Society 29, no. 4 (November 29, doi:10.1080/09687599.2012.695577. 2013): 597-610. Accessed March 21, 2017. doi:10.1080/09687599.2013.831748. Sheldon, Ann Popowich, Rebecca Renwick, and Karen K.Yoshida. "Exploring Body Image Velde, Dominique Van de, Piet Bracke, Geert and Self-Concept of Men With Acquired Spinal Van Hove, Staffan Josephsson, and Guy Cord Injuries." American Journal of Men‘s Vanderstraeten. "Perceived participation, Health 5, no. 4 (2011): 306-17. Accessed April experiences from persons with spinal cord 25, 2017. doi: 10.1177/1557988310375714. injury in their transition period from hospital to home." International Journal of Shier, Michael, John R. Graham, and Marion E. Rehabilitation Research, July 2010. Accessed Jones. "Barriers to employment as experienced May 12, 2017. by disabled people: a qualitative analysis in doi:10.1097/MRR.0b013e32833cdf2a. Calgary and Regina, Canada." Disability & Society 24, no. 1 (January 15, 2009): 63-75. Wedgwood, Nikki. "A Person with Abilities: Accessed February 20, 2017. doi: The Transition to Adulthood of a Young 10.1080/09687590802535485. Woman with a Severe Physical Impairment." Young 19, no. 4 (2011): 434-54. Accessed May Strømsø , Mette. Places of Participation – The 09, 2017. doi:10.1177/110330881101900405. Lived Experience of Persons with Disabilities in Kampala/Uganda . Master's thesis, Wehbi, Samantha, and Y. El-Lahib. "The Norwegian University of Science and employment situation of people with disabilities Technology - NTNU , 2008. Trondheim, 2008. in Lebanon: challenges and opportunities." 1-131. Accessed May 27, 2016. Disability & Society 22, no. 4 (June 11, 2007): 371-82. Accessed May 03, 2017. Tagaki, Masakuni. "Narratives of Ambivalent doi:10.1080/09687590701337736. Meanings of Acquired Physical Disability in Japan." SAGE Open, 2016. Accessed February Wheeler, Paul. "‗I Count Myself as Normal, 26, 2017. doi:10.1177/2158244016666310. Well, not Normal, but Normal Enough‘ Men with Learning Disabilities Tell their Stories Taub, Diane E., Penelope A. McLorg, and April about Sexuality and Sexual Identity ." Tizard K. Bartnick. "Physical and social barriers to Learning Disability Review 12, no. 1 (January social relationships: voices of rural disabled 2007): 16-27. Accessed May 12, 2017. women in the USA." Disability & Society 24, doi:10.1108/13595474200700003. no. 2 (March 11, 2009): 201-15. Accessed March 21, 2017. Wilson-Kovacs, Dana, Michelle K. Ryan, S. doi:10.1080/09687590802652496. Alexander Haslam, and Anna Rabinovich. "‗Just because you can get a wheelchair in the Tijm, Mandy M., Huib Cornielje, and Anthony building doesn't necessarily mean that you can Kwaku Edusei. "‗WELCOME TO MY LIFE!‘ still participate‘: barriers to the career PHOTOVOICE: NEEDS ASSESSMENT OF, advancement of disabled professionals." AND BY, PERSONS WITH PHYSICAL Disability & Society 23, no. 7 (December 03, DISABILITIES IN THE KUMASI 2008): 705-17. Accessed April 24, 2017. METROPOLIS, GHANA ." Disability, CBR doi:10.1080/09687590802469198. and Inclusive Development 22, no. 1 (2011): 55-72. Accessed February 22, 2017. doi: "World report on disability." World Health 10.5463/DCID.v22i1.12. Organization. Accessed June 08, 2017. http://www.who.int/disabilities/world_report/20 Valentim, Joaquim, and Edite Dinis. "The 11/en/ Image of Disability Among Intellectually Disabled People ." Papers on Social 24 Cite this as: Singh, Ritu, Chopra, Geeta. ‘Don’t Stare At Me….’ Exploring The Lived Experiences Of Adults With Disability. Indonesian Journal of Disability Studies (IJDS).2018: Vol. 5(1): PP 10 - 25.

IJDS 2018; Vol. 5 No. 1, May 2018, pp. 10-25 ISSN: 2355 – 2158

Yee, Michelle Jean. Lived Experiences of SanFrancisco, 2013. 1-167. Accessed May Women with Hidden Disabilities: A 27, 2016. Phenomenologically Based Study . Master's http://repository.usfca.edu/diss.References thesis, University of San Francisco, 2013.

25 Cite this as: Singh, Ritu, Chopra, Geeta. ‘Don’t Stare At Me….’ Exploring The Lived Experiences Of Adults With Disability. Indonesian Journal of Disability Studies (IJDS).2018: Vol. 5(1): PP 10 - 25.