Dyslexia as a Life-Span Disabling Phenomenon - Essay Example

? Examining a Healthcare Narrative in relation to Occupational Therapy: Dyslexia Introduction While adolescence and attending school is a challengingexperience for most people, individuals with dyslexia have a significantly added burden. Stephen McCue was one of these individuals. After going undiagnosed as dyslexic in his early years, he became alienated from school and found himself in trouble with the law. Only after being diagnosed later in life and receiving the proper diagnosis did he come to come to be able to manage his disability. Today Stephen McCue helps others through his organization Dyslexia pathways. Still, one recognizes that there is a dire need for more critical understandings of dyslexia. This research functions to address many of these concerns. Within this context of investigation this research focuses on three main areas: the importance of gaining a diagnosis, the role society plays, and the importance of assistive technology. Additionally, the relevance of the account for the OT profession is considered a well as a critical appraisal of Stephen’s own narrative. Part 1 - Gaining a Diagnosis Firstly, one must understand what is meant by dyslexia. The issue with defining dyslexia is that a universally accepted definition does not exist. Indeed, there are a variety of different interpretations. One theorist argues that, “Dyslexia is manifested in a continuum of specific learning difficulties related to the acquisition of basic skills in reading, spelling, and/or writing, such difficulties being unexpected in relation to an individual’s other abilities and educational experience. Dyslexia can be described at the neurological, cognitive and behavioral levels. It is typically characterised by inefficient information processing, including difficulties in phonological processing, working memory, rapid naming, and automaticity of basic skills. Difficulties in organisation, sequencing and motor skills may also be present” (Task Force on Dyslexia, 2001, p.28) Dyslexia: A Practitioner’s Handbook (Gavin Reid, 6). Still, other theorists argue along different lines, specifically emphasizing literacy. These perspectives note, “Prefer this definition: “Dyslexia is a difficulty with literacy which results in a person requiring a set of accommodations to be made to enable them to demonstrate their abilities. Accommodations can be defined as a set of enabling arrangements that are put in place to ensure that the dyslexic person can demonstrate their strengths and abilities and show attainment” (cited in Clark (2003), p.9). ) Dyslexia: A Practitioner’s Handbook (Gavin Reid, 8). Ultimately, it seems that a label is a necessary prerequisite for obtaining the type of assistance that can be beneficial. Apart from that, the existence of a label can be useful as it can offer to the person with dyslexia and offer a useful explanation of the nature of his or her difficulty (Reid & Kirk, p. 6). Sometimes just having the knowledge that one is dyslexic is helpful to some adults, in particular, those who have failed quite significantly at school and as a result have low self esteem. At the same time by giving someone a diagnosis, label, and help, perhaps quite rightly does, raise one’s expectations of the hope of effective support and the desire to redress the effect of previous experiences of failure (Reid and Kirk 2001, p.7). In the Stephen’s specific case he experienced tremendous hardship in his early years, but after recognizing his disability and implementing hard work and commitment was able to preserve. For Stephen, the lack of an early diagnosis has affected his education, career and self-concept a great deal. Still, he demonstrates that oftentimes-dyslexic people have considerable strengths in other modalities; for Stephen he found he had a talent for music. Because of his experiences Stephen felt he wanted to help others past their own challenges. The strengths shown by many dyslexic people of being sensitive to other people and particularly young people with their own particular difficulties is clearly one of Stephen’s strengths and motivating interests. The dyslexic person may not be diagnosed at school and as a result may not have developed compensatory strategies. Still, the use of the word dyslexia is very emotive and can have significant meaning to the dyslexic person, especially since the person, as in the case of most ‘disabled’ people, has an abundance of ability and potential. Therefore, it is crucial that the dyslexic person is viewed in a holistic way and the importance of self-concept and perhaps counseling needs of the individual are appreciated. This is essential because it is too easy to concentrate on, and deal with, the person’s difficulties but to ignore the holistic needs of the individual. McLaughlin et al (1994) stated that dyslexia is a life-span disabling phenomenon, but one that can be controlled by the individual if their self-concept is positive and their holistic needs are recognised. It is important that the dyslexic person appreciate exactly what dyslexia means as far as their strengths and difficulties are concerned and have a notion of acceptance and optimism in relation to their future (R + K, 2001, p 15). This means that a dyslexic person will always be dyslexic but with support, training and appropriate education can compensate to a great extent for the dyslexic difficulties (R + K, 2001, p 118). Crime and Prison Studies conducted on the prison population have revealed that between 30-50% of the prison population may be dyslexic (Kirk and Reid, 1999). Alm (1997) described a study carried out in three penal institutions in Uppsala County in Sweden. The study covered a total of 80 inmates. The results showed significant differences between decoding and comprehension in 31% of the sample. At first glance dyslexia may include anti-social behavior. The able school pupil, whose dyslexic condition is not diagnosed or having been diagnosed, received insufficient or inappropriate support, may result in feeling devalued at school and as a result turns to forms of deviant behavior as a way to responding to the sense of low-esteem induced by school and as a way of gaining recognition from their peers. A pattern of anti-social behavior at school may lead to more serious forms of deviant behavior and ultimately imprisonment. If that pattern of behavior were evident it would not mean that dyslexia caused people to become criminals; instead it would suggest that, if dyslexia is not carefully diagnosed and proper support provided, social disaffection might result. However, speculation of that kind is inappropriate until there is evidence that establishes the relationship between dyslexia and anti-social behavior (although it is an interesting theory). Of course, the findings of such studies will not by themselves demonstrate that a relationship exists, but the results will lead support to one side of the argument or the other in what has become an extremely controversial topic. (Reid and Kirk, 2001, p. 119). Study Kirk and Reid (1999) carried out a study involving 50 teenagers from a young offenders institution in Scotland. The instrument used for the study was QuickScan, a computerised screening test for dyslexia (Zdzienski, 1997). Of the 50 participants who were screened, 25 were found to have indicators of dyslexia. Self-esteem was particularly low in all the young offenders afflicted with the disorder (Reid and Kirk, 2001, p 126). These studies may help explain Stephen’s trouble with the law when he was a teenager. Because of the failure of the educational system to recognise his disability he became increasingly frustrated which led to his anti-social behavior. Part 2 – Role of Society Labeling/Discrimination/Stigma Barga (1996) carried out a study that examined the factors that contributed to the success of students with Learning Disabilities (LD) as well as examining the students’ experiences of labeling and stigmatisation. Labeling is defined as ‘anything functioning as a means of identification, or as a descriptive term, formal or informal’ (Barga, 1996). Labeling can be viewed as having both positive and negative aspects. Labeling was reported as being positive by some of the participants when it led to getting help from the schools. They identified the relief they felt when they were identified as having a learning disability, However, labeling was seen as a negative experience for some students when it created conditions of being separated from peers or receiving differential treatment from others; for example students being removed in a very public fashion from their classroom in order to receive special education assistance in another room, led to the stigmatisation from the other class members. Stigmatisation is defined as ‘receiving differential treatment based on others’ perceptions’ (Barga, 1996, 416). Once a person is labeled, they enter a social category, generally unwillingly. Whatever label is attached to the category is in turn attached to the person. If the label is negative, the person then becomes a stigmatized individual (Schafer & Olesca, 1971 as cited by Barga, 1996). Stigmatisation becomes apparent through name-calling, accusations and low academic expectations by the individuals’ peers and teachers (p.416). At college level, stigmatisation became either self-imposed or forced on the students. In order to receive accommodations for their disability, such as extended time on exams, the students had to reveal their disability. Labeling and stigmatisation made students feel that they did not fit in academically with their peers. As a result, the students developed numerous coping techniques in an effort to successfully manage their disabilities in school (p. 420). Ultimately, this study raises the question: Are schools effectively educating all students? In this study, the students with learning disabilities had experienced barriers throughout their educational histories. This study leads onto a more recent study that argues that institutional discrimination (in the form of disabling barriers) shape the experiences of people living with dyslexia. This study refers to the social model of disability. This is where “disability is not the result of a biological impairment that restricts social participation, but rather institutionalized (which is constructed socially) discrimination that restricts education, employment and life opportunities” (MacDonald, 2009, p348). The educational model conceptualises dyslexia as a particular learning difficulty where difficulties are overcome by educational adjustment/accommodations (Elliott, 2005, Riddick, 1995). In recent years, educational practices have begun to recognise the limitations of the educational model and are beginning to look at a more holistic social model approach (Riddick, 2001). Through the utilisation of the social model approach there is a deliberate shift of attention from ‘functional limitations’ to ‘problems caused by a disabling environment’ (MacDonald, 2009, p 349). Using a social model of disability approach, Mortimore and Dupree (2008) suggest that disabling barriers play a significant role in limiting a dyslexic person’s educational experience. These limitations lead society to believe that if a disabled person ‘fails’ in education this is caused by their impairment, a biological condition, rather than by an unequal education system (Barton, 2005). Using a social model analysis, the education system becomes an institutional barrier that conceals the structural discrimination for people with dyslexia. One can then imply that the discourse of ‘intellect’ covers up the educations relationship with under-funding and inadequate or discriminatory teaching practice. (MacDonald, 2009, p 359). Using the social model approach, this study has demonstrated some level of institutional and structural barriers that appear to facilitate this discrimination of people with dyslexia in education and employment. The aim of this model is to formulate a system of inclusion in order to shift the emphasis from the individual’s limitations to the removal of the social barriers within institutions (MacDonald, 2009, p360). Still, it’s recognized that the study is limited: it is dated having occurred in 1996 and only 9 participants were included. Self-esteem Riddick (2008) stated that dyslexic adults have relatively low self-esteem and that this low self-esteem is not limited to just academic self-esteem. This would indicate that support may be necessary when dealing with a number of life and family factors. This implies that literacy is only one part of a much bigger picture and low self-esteem can affect performance in a range of life skills (Reid, 2009, 278). Part 3 – Importance of assistive/adaptive technology Assistive Technology and employment Access to enabling technology was a hugely important coping strategy for the entire research group when discussing employment. One participant described enabling technology as ‘absolutely liberating’, and reported that after gaining access to technology he feels his life has been ‘transformed’ (Ref). A coping strategy many of the participants used to overcome stigma was to establish themselves as intelligent individuals before their colleagues or superiors became aware of their disability. Still, these disabling barriers might limit the possibility of future employment promotions and opportunities (MacDonald, 2009, 357). Compensatory strategies should include information and communications technology (ICT). Word processing can minimize writing difficulties and recent software includes help with the presentation of documents, grammar, spell-checker, structure and sequencing - indeed many of the areas that cause considerable difficulties for dyslexic people. The British Dyslexia Association has a computer committee who can be consulted on these matters (Reid and Kirk, p 17). Employment awareness It is important that this aspect is seen as a priority. Employers have a key position in relation to the selection of dyslexic people and in ensuring that their skills are fully utilised during their course of employment. Adults with dyslexia are often under the constant strain of meeting expectations determined from a variety of sources, even once secure in their jobs, they have to ensure that they fulfill the expectations of their employers. It is important therefore that the employers are fully aware of the needs and skills of people with dyslexia and utilise their skills appropriately in the workplace. Employers should also do everything they can to reduce any stigma that may be experienced by the individual and one of the most effective ways of achieving this is through awareness campaigns and liaison between dyslexia groups and employers (Reid and Kirk, 2001, p 17). Equality Act 2010, Disability Discrimination Act 1995 Since Oct. 2010 disability discrimination issues are dealt with by the Equality Act, this replaces the Disability Act 1995. The disability discrimination legislation prohibits the discrimination against people with a disability in employment. Employers must make reasonable adjustments to their premises or employment arrangements if these premises substantially disadvantage an employee with a disability. Failure to implement these reasonable adjustments is a breach of the Equality Act. There is no legal requirement to disclose a disability. However, once the employer has been informed of an employee’s dyslexia, they are on notice that they have a duty under the Equality Act (British Dyslexia Association, www.bdyslexia.org.uk). Early identification (Gavin Reis, 2009, p71) The accountability for early identification should not rest entirely on the teacher or school, but instead should be a planned and integrated activity involving the parents and professionals working collaboratively at home and in school. The school should not be the only agency involved in early identification. Structure and collaborative planning is necessary if integrative assessments are to be effective. This collaboration needs to involve teachers, parents, community workers and other professionals such as occupational therapists, psychologists and speech and language therapists. It is important that early identification of children who are at risk of literacy failure is accompanied by appropriate opportunities for intervention (p.73). Molfese at al. (2008) suggested that the ‘risk’ of dyslexia and reading-related skills deficits can be due to family history in which one or more members of the family have been determined to have dyslexia and this information can be utilised for early identification. Early labeling can be misleading and perhaps deemed unnecessary by some, but early identification of ‘at risk’ children is essential. Ideally early identification should arise from the daily business of teaching and the ‘at risk’ children should be interpreted from the monitoring of children’s responses of individual tasks. Occupational Therapy and Learning Disabilities Goodman, Hurst & Locke, 2009, p.4) OTs are interested in ‘the nature of a client’s occupational identity’, as well as the person’s ‘occupational performance’ (Duncan, 2006). Occupational Therapy for individuals with learning disabilities can be considered from the perspective of the person – with learning disabilities, their career, the OT and the inter-professional team; the environment – including the context for life and practice and service philosophies and values; occupations and roles – the use of meaningful occupations and occupational roles for OTs and people with learning disabilities (Law at al, 1996, Stewart et al, 2003). Employment opportunity allows the person to develop skills in daily or weekly routines, valued roles, potential for social integration and financial gain. Occupational Therapists don’t always take the lead role in this area. This may be for reasons of lack of expertise, local tradition or simply because the therapists have not considered this as part of core skills for working with people with learning disabilities. There is however, potential for OTs to be involved at different levels of productivity from introducing skills to enabling the individual to participate in chosen productive occupations, to supporting through the whole employment process (p. 120). OTs have a distinct role in facilitating an individual with a learning disability to look into the possibility of employment. The focus of OT strengths lie in aiding those who have more difficult needs or require complex management of access to work (Mountain at al. 2001). Few OT services are taking the challenge and investigating their specialist skills in this area. OTs need to be knowledgeable of the modernisation of local services currently taking place and use this as an opportunity (to broaden their institutional understandings and overriding effectiveness (p.126). Factors in an individual’s social and physical environment can enhance or indeed inhibit performance, as can the nature of their occupations. A job analysis is the necessary first step in the OTs making himself/herself familiar with the demands that a job places on the individual (Joss, 2007). Workplace environment designs and layouts are usually to ensure efficient production and have properties that can assist or hinder performance and purpose at work (p.129). The role of the employment specialist is to assists in the progression stages that enable the individual to become effective at the job. Evidence demonstrates that that helping people to become more socially competent in the workplace makes it more likely that they will keep their jobs as well as fit in better (Beyer et al, 2004). Whilst the support of adaptive devices and special equipment may draw attention to an individual’s difficulty, as with some assistive technology, they may also be necessary for improving performance. Adaptive equipment has been a fundamental part of Occupational Therapy. There is a need to be create a climate of opportunity and aspiration towards employment and more focus on employment outcomes as the norms for people with learning disabilities (p.131). In order to remain true to their holistic and client-centered values there are various ways that OTs can act now and in the future, to enable individuals towards the ultimate benefit of working life (as previously discussed). This is a challenging, stimulating and meaningful area for OTs and the key question is not ‘whether’ they should be involved but ‘how’? (Simons and Watson, 1999) Occupational Therapy for people with Learning disabilities: a practical guide……. Critiquing the Narrative While the narrative provided an inspiring and at times informative perspective on the life of an individual with dyslexia, one considers there are a number of shortcomings. The narrative itself lacks a definitive source. While it might be extreme to insinuate that the narrative is inaccurate oftentimes it is the case that individuals may exaggerate their story for public approval. For instance, at times the narrative felt more like a story promoting Stephen’s life and good deeds rather than a narrative that truly demonstrated the struggles and hardships he had to overcome to reach his ultimate success. In other instances, however, having a personal account of the narrative greatly contributed to the tone of the work. One considers that the audience the piece was aimed at and the appropriateness of the vocabulary used were both effective. The narrative offered a succinct and informative life history for the individual in question. In these regards, it traced his early childhood struggles with dyslexia to him rejecting school and pursuing outside goals until later in life. Indeed, one particularly recognizes the difficulty Stephen faced in not being diagnosed for all those years. However, it perhaps focused too much on the positive aspects. It would have been helpful to have more insight into what it was like for him before he was diagnosed with dyslexia. Additionally, it was a little too vague in places and could have told us more. For instance, Stephen indicates he got in “trouble with the law,” but never indicates the kind of trouble. Furthermore, it would have been helpful to more thoroughly understand the struggles Stephen faced, how and why he wasn’t diagnosed, and the specific ways the technology aided him in overcoming his challenges. Conclusion To conclude, this paper has examined the narrative in relation to three specific areas: the importance of gaining a diagnosis, the role society plays, and the importance of assistive technology. Additionally, the relevance of the account for the OT profession has been examined and a critical appraisal of the narrative has been provided. While many specific elements related to dyslexia have been considered, one of the central thorough-puts of the research is the recognition that by gaining a greater understanding of dyslexia society can reduce stigmatization and ensure individuals such as Stephen don’t have to face the hardships they face. Read More