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Parette Assistive Technology Use and Stigma | Social Stigma | Developmental Disabilities

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  Assistive Technology Use and Stigma Phil Parette Illinois State University  Marcia Scherer Institute for Matching Person and Technology  Abstract: Issues related to stigma and its impact on assistive technology (AT) use with persons having developmental disabilities are addressed. While stigma has been known to be associated with presence of  disability for many years, relationship between stigma and AT usage, particularly when working with families across cultures, has only just begun to be examined. Issues confronted by AT decision-making teams related to stigma include family expectations of AT, visibility resulting from use of AT in public settings, and perceptions that children will not attain important developmental skills if they become reliant on devices. While numerous approaches for AT decision-making have been implemented in the field, absence of validity and reliability data related to such approaches emphasizes importance of understanding potential influences of stigma associated with AT use. Specific areas that can contribute to stigmatization include (a) device aesthetics/cosmesis, (b) gender and age appropriateness, (c) social acceptability, (d) sublimation and professional deference, (e) teachers and acceptance of disability, and (f) universal design principles. Importance of future research that explores stigma and government policy and impact on AT decision-making is noted. The experience of   stigma   is common amonghuman beings (Crandall, 2000). As noted by Crocker, Major, and Steele (1998), “A person who is stigmatized is a person whose socialidentity, or membership in some social cate-gory, calls into question his or her humanity—the person is devalued, spoiled, or flawed inthe eyes of others” (p. 504). All persons haveexperienced some degree of   stigmatization   at some point in their lives, whether it is feelingsof isolation, alienation, exclusion, or embar-rassment resulting from being different insome way.References to the phenomenon of stigmati-zation of individuals having disabilities may befound throughout the professional literature(see e.g., Barker, 1948; Fine & Asch, 1988;Goffman, 1963; Gray & Hahn, 1997; and Jones, Farina, Hastorf, Markus, Miller, &Scott, 1984). For persons with developmentaldisabilities, stigmatization is often a reality having varying effects, including, but not lim-ited to, (a) less than ideal treatment (Crockeret al., 1998); (b) disrupted social relations(Goffman); (c) person avoidance, anxiety,and depression (Crandall & Coleman, 1992);and (d) a distorted self-image and resultingpoor self-esteem (Wright, 1983). Some peoplemay even attempt to hide their developmentaldisabilities from others to avoid the stigma (deTorres, 2002; Liu, 2001; Lopez-De Fede &Haeussler-Fior, 2002; Miller, 2002; Napier-Ti-bere, 2002; Pinto & Sahu, 2001).Stigmatization has also been suggested tobe associated with assistive technology (AT)usage for persons with acquired disabilities inlater life (Brickfield, 1984; Luborsky, 1993;Zimmer & Chappell, 1999), often resulting inabandonment of devices. For example, elders with disabilities may choose not to implement  AT that is not routinely used by the generalpopulation (e.g., wheelchairs, walkers) giventhe message communicated to others that they are vulnerable, or if it creates social bar-riers (Lebbon & Boess, 1998; Luborsky, 1993;Polgar, 2002). Persons of any age, however,can feel stigmatized by devices that signal lossof function. As one woman in her 40’s born with cerebral palsy noted when surgery on herneck left her paralyzed from the neck down,resulting in the need for a more sophisticated wheelchair:To everyone’s relief, the doctor said I didn’t need either the cervical collar or my corset  when I used the wheelchair. I was especially  Correspondence concerning this article shouldbe addressed to Phil Parette, Department of SpecialEducation, Illinois State University, Campus Box5910, Normal, IL 61790-5910. Education and Training in Developmental Disabilities, 2004, 39(3), 217–226  © Division on Developmental Disabilities Assistive Technology / 217  glad, as I didn ’ t like to look that disabled, or you could say, I wasn ’ t accustomed to hav-ing that many people stare at me. (Scherer,2000, pp. 93-94)Hearing aids are perceived as stigmatizingby many aging persons, but also to those whorequire them at younger ages. One womansaid about the need to wear hearing aids at age 20:But after getting my hearing aid, every timeI went outside I wore a scarf, so that if the wind blew, people would not see that I worea hearing aid. You just didn ’ t see twenty  year-olds wearing a hearing aid. It was not an easy thing to get used to. (Scherer, 2003)The choice to wear a hearing aid and feelstigmatized, or not wear a hearing aid andpossibly miscommunicate is a dilemma withstrong implications for one ’ s self-esteem. Ad-ditionally, the personal and social aspects of coming to terms with a hearing loss are oftenstressful. When under stress, one ’ s ability tohear and participate in interactions becomescompromised. Thus, avoidance of AT canhave implications for social participation andboth mental and physical health (Scherer,2003):It  ’ s been very hard over the years. . .becauseI had gotten into so many situations where Ididn ’ t fully understand what is being said. And I ’ d say maybe the wrong thing or re-spond to something I heard, but the subject had already changed. And when you feeloff-the-track and lost so often, you begin tolose your sense of being okay (Scherer,2003). When working with individuals with devel-opmental disabilities, it is important to ex-plore their expectation of AT use and readi-ness for that use. Even when a person with adisability may be ready to, and even excitedabout, using AT, stigma has been suggested tobe associated with choices made by families of school-age students with disabilities to not im-plement AT devices due to perceived in-creased visibility or attention received whenchildren use devices in public settings(Brooks, 1998; Smith-Lewis, 1992). Stigma hasalso been reported to be associated with ATdue to fears that the child will not attain im-portant developmental skills if they rely on adevice (Allaire, Gressard, Blackman, & Hos-tler, 1991; Berry, 1987). As noted by Brookes(1998):  “  Assistive devices become a signal be-cause the sight of a person using assistive tech-nology sends a message that this is not anordinary person and that one needs to behavedifferently around this person ”  (p. 4). Giventhat a person ’ s self-esteem and self-image aredeveloped across time through interactions with others (Crocker & Quinn, 2002), pres-ence of AT may de fi ne those interactions andcontribute substantially to a person ’ s self-im-age (Scherer, 2000). While the literature has references to the stigmatization   of individuals having develop-mental disabilities (see e.g., Barker, 1948; Fine& Asch, 1988; Goffman, 1963; and Gray &Hahn, 1997), little information exists that ex-plains  why   these persons feel stigmatized, and what the potential impact of stigma is on pro-fessional recommendations regarding servicedelivery. This becomes problematic given therelative  ‘  youth ’  of the  fi eld of AT (Edyburn,2000). Numerous models have emerged toassist AT teams in decision-making about de- vices and services for persons with disabilities(Bowser & Reed, 1998; Chambers, 1997; Insti-tute for Matching Person and Technology,2000; Melichar & Blackhurst, 1993; Williams,Stemach, Wolf, & Stanger, 1995; Zabala,1998). However, Watts, O ’ Brien, and Wojcik(2003) note that little reliability and validity data are currently available to support effec-tiveness of such approaches for AT decision-making. Adding to this problem are (a) theexpectations of family (and user) input andactive participation in decision-making pro-cesses that is deeply embedded in many deci-sion-making models, and (b) lack of sensitivity on the part of teams to cultural and family issues during AT decision-making (Kemp &Parette, 2000; Parette, Brotherson, & Huer,2000; Parette & Huer, 2002; Parette & McMa-han, 2002).The remainder of this paper focuses onissue areas related to stigma and its impact onthe AT decision-making process, with recom-mendations for future research for consider-ation by professionals. Speci fi c areas ad-dressed are (a) device aesthetics/cosmesis, 218 / Education and Training in Developmental Disabilities-September 2004  (b) gender and age appropriateness, (c) so-cial acceptability, (d) sublimation and profes-sional deference, (e) teachers and acceptanceof disability, and (f) universal design princi-ples.  Device Aesthetics/Cosmesis  Levels of comfort with use, even around family members, vary widely depending on how   “ un-usual ”  an AT appears. Feelings of being con-spicuous leave many users feeling deviant andstigmatized (Scherer, 2000). How any partic-ular individual feels about him or herself  when using AT is intimately tied to self-es-teem, the degree to which the person willreach out to others and initiate relationships,and ultimately one ’ s social participation or withdrawal. When one isn ’ t involved in socialrelationships, it is dif  fi cult to form a sense of acceptable social behavior, thus leading inmany cases to isolation (Scherer, 2003). Gender and Age Appropriateness   While women with developmental disabilitiesare often very skilled in using technologies forcommunication, mobility, learning and theperformance of daily tasks, the number of these women involved in the design and de- velopment of such products is very small. Thisis the proverbial Catch-22 situation: The un-dereducated or underemployed woman with adisability is unlikely to get the technology ortraining necessary to compete with her non-disabled counterparts educationally or voca-tionally. Without technologies, women withdisabilities cannot perform tasks indepen-dently or without fatigue or enervating pain.To get the appropriate technology requiresaccess to information about and the ability topay for them — another Catch-22 (National Women ’ s Health Information Center, n.d.).In the area of an AT ’ s appearance, prefer-ences reign, and preferences of adolescents will be different from adults. Worldwide, ado-lescents with disabilities tend to be or aremore concerned with their appearance andprojected image than older adults (Scherer,2003). Gender, age and ethnoracial differ-ences in the use of AT have been studied tosome extent (e.g., Gitlin, 2002; and Rintala,2002) but researchers note the need for morefocus in these areas.Recent reports from the U.S. NationalCouncil on Disability (1996) and the Euro-pean Commission ’ s Telematics ApplicationsProgram (Ballabio & Moran, 1998) acknowl-edge that older individuals and women withdevelopmental disabilities often are poorly matched with a product they need to use reg-ularly. As they age, consumers have a clearpreference for products that they do not haveto think about (are easy to care for and main-tain and which accommodate to them, not  vice versa). When presented with a choice,consumers will select assistive devices, as they do with any product, according to character-istics that satisfy their preferences. Social Acceptability  Many psychosocial factors impact the use ornonuse of AT, including personality, responseto disability and the environment or socialmilieu in which technology is used (Krefting& Krefting, 1991; Scherer, 2000). Social ac-ceptability of AT has been identi fi ed as one of the critical elements impacting whether or not a particular device is used by a person with adevelopmental disability and family (Pippin &Fernie, 1997). As noted by Ciof  fi  (2002), pub-lic behavior (such as AT usage) activates cog-nitive, social, and motivational forces that align a person ’ s self-views with those of others.Of particular importance for individuals withdevelopmental disabilities and their familiesmay be the heightened sense of attention andevaluation engendered by the AT act (Saenz,1994). People who feel themselves to be un-der greater scrutiny in social settings may feelthat their behavior is more public (Ciof  fi ), which may be at considerable odds withstrongly held collectivist cultural values that emphasize group membership versus individ-ual recognition (Hyun & Fowler, 1995;Ramirez & Casteneda, 1974). Collectivism rep-resents a central point of departure between Western society and most traditional minority cultures (Harrison, Wilson, Pine, Chan, & Bu-riel, 1990). Collectivism may be particularly problematic for Euro Americans who typically place high value on independence and indi- vidualism that is so often re fl ected in the AT Assistive Technology / 219  component of service plans developed forchildren with developmental disabilities(Harry, 1994). At the same time families from culturally and linguistically diverse backgrounds may  want immediacy of results when AT devicesare prescribed for their children with devel-opmental disabilities (Parette & Huer, 2002).Such expectations for AT bene fi ts may be at odds with professional perceptions regardingthe appropriateness of devices in a range of milieus.On examination of these two very different perceptions of the value of AT in social set-tings, one sees a strongly held perception onthe part of a Euro American professional that the AT device is desirable since it promotesindependence, whereas the family member isconcerned with the practicality of the device. When professionals are insensitive to the so-cial expectations of a particular AT devicebeing considered for a child with a develop-mental disability, dissonance between the fam-ily and other AT team members can occur.This may be especially true of persons fromculturally and linguistically diverse back-grounds who perceive themselves as  ‘ tokens, ’ that is, a member of a group who feels that hisor her group membership is perceived nega-tively by others (Crocker et al., 1998). If aperson feels that they are a member of a tokengroup (e.g., African American) they may befar more sensitive to professionally prescribed AT if it singles them out and is perceived toreinforce stereotypes held by others (Biernat, Vescio, & Theno, 1996; Schuman, Steeh,BoBo, & Krysan, 1997).Professionals involved in making decisionsabout AT devices must be sensitive to bothchild  and   family values and preferences re-garding appropriateness of device usage insocial purposes. Such sensitivity will contrib-ute to more effective AT decision-making. Sublimation and Professional Deference   An assumption sometimes made by many ATprofessionals is that certain devices prescribedfor children with developmental disabilitiessatisfy multiple users needs and thus shouldbe used across environmental settings (e.g.,augmentative and alternative communicationdevices; mobility aids; ampli fi cation devices;Lindsey, 2000). Such  fl exible expectations of certain types of AT may re fl ect the long-stand-ing  professional   perception of the importanceof generalization of skills acquired in interven-tion settings (Matlock, Lynch, & Paeth, 1990;Meese, 1994). Of course, such multiple milieuusage presupposes that user needs and envi-ronmental demands in these settings justify use of the device (Institute for Matching Per-son and Technology, 2002). Although some AT decision-making modelsgive considerable credence to examining mi-lieus in which devices will be used (e.g., Insti-tute for Matching Person and Technology,2002; Melichar & Blackhurst, 1993; and Za-bala, 1998)  and   input from family membersand users (e.g., Bowser & Reed, 1998; Cham-bers, 1997; Williams et al., 1995; and Zabala),the cultural values and preferences of family members may sometimes be at odds withthose of professionals. Families may view judg-ments of professionals to be more important than their own (Fewell & Vadasy, 1986;McBride, Brotherson, Joanning, Whiddon, &Demmitt, 1993). This feeling of loss of power,or transfer of decision-making power to pro-fessionals who are viewed as knowing  “  what isbest  “  for the family, may contribute to the lossof much valuable information during the as-sessment process (Parette & Brotherson,1996).If family members have strong culturally-based values regarding the importance of ed-ucators, that is, teachers and other profession-als opinions are to be respected and not questioned, family opinions and preferencesregarding AT being considered for the child with a developmental disability may not beexpressed (Parette & Huer, 2002; Roseberry-McKibbin, 2002). This can result in devicesbeing prescribed (and implemented in somesettings) because families agree to profes-sional recommendations, though it may alsoplace families in the situation of dealing withstigma issues when devices are to be imple-mented in social settings. For example, Asianfamilies typically show great respect for edu-cation professionals and may tend to be reti-cent in expressing their opinions if they differfrom those articulated by the professionals.Rather than expressing their concerns about the stigmatizing effects of the recommendeddevices, family members may simply acquiesce 220 / Education and Training in Developmental Disabilities-September 2004
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