Ann-Marie Houghton
Disability effective inclusive policies: student and staff perspectives on experiences throughout the student lifecycle
Ann-Marie Houghton
Lancaster University, UK
Paper presented at the 36th Annual SCUTREA Conference, 4-6 July 2006, Trinity and All Saints College, Leeds
Disability Effective Inclusive Policies (DEIP): a project context
The DEIP project, funded by the European Social Fund (ESF) is a collaborative research project between Sussex and LancasterUniversities.It aims to explore ways in which higher education institutions support disabled students through higher education and into employment.The DEIP project has explored the experiences and understanding of services with current disabled students and university staff including policy makers and practitioners from Sussex and Lancaster, as well as analysing institutional documentation.
Although not discussed in detail within this paper, in the context of the conference it is interesting to consider the impact of external funding bodies such as the ESF on the direction and ultimate dissemination of the research.For instance, the ESF employment focus means that the linkages between the beginning and end of the student lifecycle assume a greater significance.Existing literature and disabled students’ accounts of higher education are analysed in terms of how, if at all, the experiences at the start of higher education might provide a foundation and preparation for future employment.There is a heightened connection between past, present and future experiences.Reeve (2004) argues that past experiences are influential in respect of the psycho-emotional aspects of disability, which can determine an individual’s reaction to future situations.In addition, the emphasis on employability and the longer-term outcome of higher education participation on future involvement of disabled people in the workforce reinforces the wider contextual factors that influence the lifelong and lifewide learning experiences discussed by Pollard,(2003).
Models of disability: a wider context
In addition to the employability agenda associated with project funding, the DEIP project is also informed by, and engages with academic and policy debates relating to models and definitions of disability.Models of disability can be important for explanatory purposes and maybe useful when examining and changing policy and practice Lewellyn and Hogan, (2000).
The two dominant models are both subject to interpretation and encompass a range of subsidiary frameworks that share their originators overarching focus.For example, the medical or individual model focuses on individual need and objectifies the disabled person as a recipient of treatment, support, or assistance.Until recently, this model dominated the policy and practice within higher education and the compulsory education system.The labelling and categorising associated with the medical model are integral to the administrative and welfare models that influence how the education system responds to disabled learners.
In contrast, the social model focuses on the role and responsibility of society, structural and organisational systems that shape provision, including teaching and learning experiences.Within the social model, definitions distinguish between impairment that refers to the individual condition, and the term disability that arises as a result of physical, environmental, legal, cultural and attitudinal barriers experienced by a person with impairment.As (Swain et al., 2003, p24) explain: ‘disability is not something one has, but is something that is done to the person … being excluded or confronted on a daily basis by barriers’.(See Houghton, 2005 for a further discussion of models of disability).
Identifying the model that informs or underpins institutional policy and action is not always straightforward, because of the difference between declared intention and eventual action.The adoption of a particular model by an institution ought to have implications for institutional practice.There is, however, no guarantee that institutional policy statements advocating a particular model, will automatically result in a corresponding practice.Furthermore, it is likely that in periods of change,that traces of previous ways of thinking and acting remain alongside more recent discourses.Change is typically uneven across different sections of an institution as a result of varying levels of awareness, professional allegiance or the centrality of the issue to a person’s job.
The models of disability not only shape institutional response to, and provision for disabled students, they also influence the nature of the data analysis.Disability literature, especially that emerging from advocates of the social model, often states the importance of involving disabled people in research about disabled issues.This Swain et al. (2003) claim is important for data collection and analysis because it ensure the voice of disabled people is included.This is also important if the research is not to ‘other’ disabled people.Within the DEIP team, members bring a range of personal experiences and relationships to different disabilities including their own, and those of family, friends, colleagues and students.This inevitably influences how we have reacted to, and engaged with the data, as well as the literature.With reference to myself as a wheelchair user, I have an obvious disability; the issue of disclosure is one I can only avoid if I am not physically present.Despite this my personal identification as a disabled person fluctuates according to the context, my experiences and interaction with others.My relationship to disability is inevitably personal, and whilst it brings me insider knowledge of the issues, this can also become an obstacle.The benefits of researching within a team with wide ranging experiences enable us to provide from within, mechanisms that support and stimulate individual and collective discussion about the data collected, its analysis and dissemination.
In the rest of this paper the issues of disclosure, transition, policy and legislative requirements, such as reasonable adjustment and employability, are discussed.Issues are illustrated with reference to comments from disabled students and university staff.For the purposes of the discussion each issue is discussed in relation to a specific phase of the student lifecycle.It is, however, recognised that many of these issues can feature in all, some or none of the phases of an individual student’s journey through higher education and into employment.
Pre-entry admissions: to disclose or not to disclose a disability- that is the question?
The decision to disclose or not to disclose a disability was an individual and complex one, influenced by factors of personal identification with the disability label, institutional or system requirements associated with academic and financial support and society’s awareness or response to a specific impairment.Students also gave different reasons for the decision to disclose or not disclose and individuals responded differently depending on their personality or situation in which they disclosed.
Unlike previous educational sectors financial support for disabled students through the Disabled Students’ Allowance is dependent on disclosure and an assessment of need.The administrative system therefore links support with the individual identifying that they have a need, despite the aim of inclusion; in effect this process reinforces the medical model approach to funding support.Unlike school and further education, funding is awarded to the student depending on their willingness to identify as a disabled student.Students’ response to forms and disclosure varies.Some students are comfortable with disclosing, ‘I’ve always disclosed my dyslexia as soon as possible’ (Desmond), others will disclose when asked, ‘if there is a box, I’ll tick that’ (Derek), others will do so, but more reluctantly, ‘if it said on the application form, I suppose I’d have to tick, but it is that label of disability that I don’t like‘ (Donald).Another student,Morgan, chose not to disclose her mental health issues during the application phase and spoke about how she:
didn’t feel comfortable not disclosing, I sometimes wondered if this was deceptive … I think that once you are somewhere or once they meet you they can see it’s not a big deal, but when it’s on paper that’s different.
There were a range of myths in terms of both the possible benefits and pitfalls associated with disclosure.Generally previous experience of disclosure was influential, with positive experiences reinforcing the benefits and increasing the likelihood of future disclosure.This is an important point to note, because for students with a hidden impairment this is a decision that they have to make anew throughout the student lifecycle and beyond as they move into employment.
Entry and induction: crossing the great divide
As students enter higher education they face a host of factors associated with transition from one educational sector to the next.Previous experiences of transition influence the entry and induction phases and shape how they cross, what for some is, a great divide.The divide can relate to all aspects of the student experience.For instance, disclosure and personal presentation of self, as discussed in the context of admissions and progression; adapting to alternative academic support systems; and adjusting to independent living including issues associated with accommodation, catering, socialising, and financial management.
A student’s eligibility for financial assistance provided by the Disability Students’ Allowance (DSA) is a significant feature of the entry and induction phase.It is via the DSA that students can obtain equipment and one to one support to assist them with their transition and studies.Even for students who have disclosed their disability and received information about applying for the DSA prior to their actual entry, there was often a delay in funding coming through and support being organised.For students who do not disclose until they arrive, or in the case of students who are not diagnosed until they get to university, there are often greater delays.Students response to the DSA was mixed, several spoke about the additional burden and responsibility.As Sally explained:
I don’t think it’s fair, because you’re already responsible for all your studies, you’ve got this thing [DSA] that involves all these agencies and sometimes you feel like you could just do with some support.… the first year is having to sort all this DSA out as well as learning to do the course.
A potential gap in DSA support relates to the social aspects of student life.As a DSA assessor explained: ‘I am sure there is an awful lot more that can be done socially to improve student life on campus’.Crossing the divide from school to university requires students to establish themselves in a context in which they can study effectively, but also one in where they can engage in activities that provide additional evidence of their employability.
On course: street level bureaucrats
Universities have a wide range of support services designed to assist all students with academic, personal and welfare needs.In addition to the general support mechanisms, disabled students are able to access extra services designed to address specific needs.What is interesting in the context of the medical and social models of disability is that although university policies profess allegiance to the social model, at the same time they organise and publicise assistance as part of student support, with its associated compensatory image.There was evidence that staff and students saw disability support as something additional that allowed them to cope with study and life at university.
There is a real tension between making available quality services offered by staff with particular expertise and embedding support within mainstream provision.Thomas et al. (2002) recommend that academic and student support within university should be seen more holistically and recognised as an institutional responsibility not solely the domain of central student support services.As one student support colleague explained:
we had the idea that we would gradually make ourselves superfluous to requirements because everyone would begin to own disability and there is still a bit of, “This is one of your students”, kind of issue and we have to bat that back in as collegial way as possible … people just have to take on board that they are everybody’s student and we’re there for the support
An interesting observation of the actual implementation of university policy is the extent to which colleagues involved in delivering support adopted an individual approach.From an organisational change and delivery perspective there is clear evidence of staff operating in what Lipsky describes as, ‘street level bureaucrats’ (Hudson, 1993).Staff involved in providing support faced the ongoing challenge of trying to balance the policy service demands with what is practical.It was evident when staff spoke about their own and other colleagues’ response to the requirements of the Disability Discrimination Act (DDA) or university policy that they were involved in trying to interpret what was ‘reasonable adjustment’.Although one student support advisor described the DDA as ‘massively important’ and ‘a powerful force because institutions are inert basically when it comes to change’,implementation was inevitably at the discretion of the member of staff, or service.One careers advisor referring to the DDA referred to it as a ‘stick to beat people with, though people find ways around the legislation if they want to’.Although they felt there was space for personal adaptation typical of a street level bureaucrat another student advisor noted:
The recent legal developments have just got everybody on heightened anxiety.It’s kind of fortunate that the changes in the DDA are not really clarified.… I think there is a nervous, reactive, nervous response.
The individualised response does raise some interesting questions in terms of consistency and quality of support.Inevitably, the implementation of disability guidelines, by staff operating in different organisational sections and therefore cultures of the university, means that within the same institution, support may be offered by one colleague or service that might be regarded as a contradiction to service provided by another colleague.Another tension was that whilst the overall policy focus might be on inclusion - a feature of the social model; students seemed to prefer support that was individual and typically hidden from their peers and tutors - a feature more typical of the deficit medical model.
Progression and employment: another crossing of another divide
With respect to widening participation and employability there is a tendency for the pre-entry experiences to focus on widening participation, and the leaving end-of-course or progression phase, to concentrate on employability (Morey, et al 2003).Yet there are many ways in which the two phases are similar and students may face a déjà vu experience with respect to a number of the decisions and actions they need to undertake in each phase.The decision and response to disclosing their disability during the job application process need to be made anew.Accessing relevant and timely information about the availability of, and eligibility to, financial, practical and personal support is as important for disabled graduates as disabled students entering higher education.
Preparation for progression into employment is evident throughout the higher education journey, and will often be influenced by the disabled graduates pre-university experiences and influencers.For instance, Reay (1998) describes how aspirations and future goals are influenced by a ‘deeply ingrained system of perspectives, experiences and pre-dispositions [that] family members share’ (p528).Although her research focuses on social class and the concept of habitus, I would like to suggest that there is a parallel with disabled students whose views about the future and what might be possible are also affected by what is regarded as acceptable for someone with a disability.
When applying for university Brooks (2002) identifies three main sources of information: social networks including family and friends, educational institutions and written information.With respect to employment, these three sources are just as likely to feature within the decision making process, with higher education staff becoming part of the social capital network.In this final phase of the student lifecycle, student awareness and staff accounts of how useful the careers service is as a specialised source of information and network of higher education staff are explored.
For practical and principled reasons discussed by Moray et al. (2003) neither do universities offer discrete or separate careers advice nor do they have a named careers advisor for disabled students.Individual staff are, however, interested and take a more active role in raising issues from either a specific disability perspective or more generally within a given service.For example,a mental health advisor highlighted needs of students with mental health issues and a careers advisor attended a university wide disability network and then shared information with her careers service colleagues.
Identifying who or where to get specialist advice about crossing the divide from study into employment is not straightforward.Awareness about how or what the careers service could offer generally, was limited, especially with respect to disability focused information, advice and guidance.Student perception sometimes influenced their use of the service ‘I’m not sure how clued up they are for disabled people because I know that my needs might be completely different.’ (Pat)