Case Study A
Information from SKILL Website (accessed 25th October 2004). Sarah-Jane Rhead, Maths, University of Bath
I’m a second year undergraduate studying Maths at the University of Bath. I have ankylosing spondylitis, a rheumatic condition that affects all of my joints and also makes me tired. When choosing where to study, I had lots to consider – not just the course and location, but also the physical environment and the support available to me as a disabled student.
Bath is a campus university, it is ideal for me because it is extremely compact and has good transport links to the city. They also have a great Learning Support Service, which is really important to me because of my disability. When investigating different universities, Bath gave me the best response to my initial enquiries. They had time to listen and to work to find answers and solutions to my enquiries and difficulties. I receive the Disabled Students’ Allowances (DSAs), which is very helpful, as it pays for note-takers in my lectures, an amanuensis for my exams, and computer equipment.
During my first year I became a member of ACCESS – our students’ union’s support group for disabled students. At the end of the year, I was elected to the position of the students’ union representative for students with disabilities, medical conditions and learning support needs. I represent students with disabilities by relaying their needs and opinions to the union and university, as necessary. I also convene and chair ACCESS.
This experience has given me the opportunity to help ensure that our union is a union for every single student, pro-active in combating discrimination and other barriers.
I have gained experience at meetings, publicising and organising events, and working with a variety of people. I have also helped organise a disability awareness week, which has given ACCESS the opportunity to inform people and increase awareness.
Going to university can be an exciting time, but it can also be very daunting as well. I have found the transition from living at home, while I was at school, to living at university, as an undergraduate student, a liberating experience. I also consider it a victory for me as a disabled person. I am in control of managing my own money, and I am responsible for doing my washing, getting myself to where I am supposed to be on time and choosing what to eat. All students have these issues but I found some of them quite challenging. I am glad I have persevered – it has really been worth it.
I have had problems both in terms of the provision of academic support and the attitudes of individuals, but all things considered I can honestly say that I’m enjoying being a student. I’m more independent and have met some fantastic people.
I found the idea of telling people about my disability really tough – you only get one shot at it and there will always be those who can’t accept it. However, that is life and if they cannot accept me for who I am then they are not worth it! I found that explaining what my disability meant to me was a useful starting point, rather than just saying ‘Hi I’m Sarah-Jane. I have a disability’. I also reassured them it was OK to ask questions, and I think that has helped. Some have even got involved with disability awareness initiatives!
I have become more comfortable asking friends for help as a result of going to university. They understand that some things take me more time or that I need to do them differently.
At school I tried to hide my disability, but at university I’ve become more comfortable with the idea that I didn’t choose it but it makes me who I am. It’s part of me, my self-identity. I am who I am, and I am proud to be me.
Case Study B
Source: http://dart.lboro.ac.uk/CaseStudy-NSchecked.htm (information accessed and extracted September 2008)
Geoffrey is currently in the third year of a PhD in Mathematics. Prior to this he completed a BSc in Physics and Mathematics at the University he is currently attending, and a MSc in Mathematics at a different higher education institution. Geoffrey had always intended to move onto a PhD but felt that a (taught) Masters would give him better preparation for PhD study in his chosen area, improve his employment prospects, as well as give him experience of life at another university and opportunity to meet different people.
Geoffrey has Friedreich’s Ataxia, a condition that impairs the functioning of nerve cells gradually over time. It eventually leads to a loss of ability to move, though the brain is unaffected. A side effect of Friedreich’s Ataxia is energy loss in muscles. After experiencing no disability in early life, Geoffrey started experiencing control and coordination problems whilst in primary school. Over time these worsened, affecting mobility and speech. This also resulted in slowing down his writing speed and presentation. Geoffrey resisted the use of a wheelchair for as long as possible but has been confined to one since the age of 17. Another side effect that Geoffrey has experienced is that he can be affected by drowsiness if he does not take frequent breaks.
Geoffrey likes to stay as independent as possible, and although he has access to carers and assistants these are often ‘on call’ in case he needs assistance to visit the Maths Department, or go to the canteen or to social activities.
LEARNING & TEACHING EXPERIENCE
Geoffrey has experienced a number of barriers in learning and teaching situations. The following are some of the most relevant experiences and the strategies that have been adopted to address potential barriers:
During his undergraduate course, Geoffrey had the assistance of a note taker during lectures. As he had one main note taker at this time he was able to build up a good working relationship with the note taker. During his masters Geoffrey did not have such assistance and relied on friends or lecturers to supply him with notes. His current PhD does not require him to attend lectures.
Geoffrey had laboratory work in the physics component of his undergraduate degree. Here he required the assistance of an academic assistant to set up experiments and conduct practical work. Geoffrey would assist in this and take down the results of practical experiments.
Geoffrey finds that online resources have been an ‘invaluable tool’ for him, allowing him to find information quickly and to read academic papers from his university accommodation or office. The only problem lies with some academic papers not being available online. When using the library Geoffrey’s assistants have helped him by photocopying library material and reaching books from high shelves.
Assessment / Examinations
Geoffrey has always performed well in examinations. He is allocated 50% extra time for examinations. He prefers to write or type his exam answers himself, which is very time consuming. Over time, however, examinations have become more problematic for Geoffrey, in the process eroding both his confidence and performance. In particular, Geoffrey found the length of examinations and their relative frequency on his postgraduate masters course very taxing. As a consequence he feels that his performance in these examinations did not reflect his knowledge and understanding.
Geoffrey has always met the deadlines set for coursework despite the extra time it would take him to complete work compared to fellow students
Geoffrey has little or no experience of group work, class discussions, site visits, fieldwork, or making presentations. He has done some accountancy work for work placement and reports no problems with this.
Impact on Learning & Academic Progress
Geoffrey notes that currently he tends to spend the majority of his available time reading or studying for his course in order to try to compensate for his lack of speed (in terms of writing etc.). As his area of study requires a lot of work involving calculation, Geoffrey spends a high proportion of his time on reading various texts from the mathematical literature, some of which is not directly related to his area of study. Whilst offering benefit in the long term this has slowed him down in the short term.
Geoffrey is acutely aware that difficulties in communicating freely have had a negative impact. His natural diffidence has been aggravated by the response of others. He feels that people tend to feel awkward in his company and therefore tend to ‘ignore’ him.
Geoffrey comments positively upon the support he has received from the University’s central disability support unit. This has involved the provision of academic and personal assistance, and help in applying for funding for computer equipment. Geoffrey notes that his department has also been supportive in providing suitable accommodation and computer equipment. In addition, Geoffrey states that the emotional support and motivation provided by family, friends, tutors and mentors has been much valued.
ACADEMIC TUTOR’S PERSPECTIVE
Geoffrey’s PhD supervisor (PS) tends to meet him once a week for an hour to discuss progress and direct future activities. PS (who is also the department’s disability support co-ordinator) identifies a number of issues that have affected Geoffrey’s progress during his PhD.
PS remarks that he anticipated that there would be issues but was not prepared for the fact that personal communication would prove to be so limited. Geoffrey has great difficulty in speaking resulting in prolonged and spontaneous discussions being effectively impossible. Verbal communication therefore tends to be limited preventing PS from probing fully Geoffrey’s understanding of concepts and ideas in the manner that he could do so with other PhD students. As a result he feels that he remains unsure of the extent of Geoffrey’s understanding of certain concepts and that Geoffrey might easily miss out on advice and guidance that would be appropriate to the progress of his research. In addition, Geoffrey is unable to make presentations about his work to other PhD students, a practice that is standard for PhD students within the department.
Other issues identified by PS include the difficulties that Geoffrey would have in researching paper-based resources in the library, both in terms of reaching appropriate texts without the help of others, and in perusing texts – in the manner that other students would do – to assess their potential benefit to him. PS also notes that ironically fire doors within the department building might prove difficult for those students using wheelchairs to evacuate the building quickly should the need arise.
In order to overcome the difficulties identified, PS notes that a number of adjustments have been made. Geoffrey maintains a written report or log of work in progress that is shared with PS on a weekly basis. This provides PS with an insight on the development of Geoffrey’s work that would be very difficult to acquire by verbal means. Geoffrey is also excused the requirement of attending weekly seminars presented to PhD students within the department. These seminars are generally viewed as part of the PhD learning experience with potential benefits to the areas or topics that a student might be researching, but for Geoffrey they can be physically very taxing to sit through. As a result Geoffrey only attends those seminars that are more directly relevant to his research. A shift of focus has also been made to Geoffrey’s PhD study, though this is not an uncommon occurrence with PhD students.
PS feels that Geoffrey’s progress as a PhD student has been affected, particularly as a result of the difficulty in probing his understanding of concepts and ideas.
On a more general level (beyond the subject of this Case Study), PS notes other factors relating to disabled students. These include a tendency on the part of disabled students to be diffident in raising issues of concern to them. There appears to be an expectation that “the system will automatically adjust”. PS feels that disabled students may often need the support of an experienced academic as a personal tutor or PhD supervisor. PS notes that there are issues concerning appropriate assessment methods, and feels that a balance may need to be achieved between multiple assessment methods. Finally, PS noted that where verbal communication might be a problem a communications strategy involving, possibly, the use of e-mail would be most helpful.
CONCLUSIONS / RECOMMENDATIONS
This Case Study highlights a number of issues. Geoffrey’s experiences sheds light upon the factors that affect accessibility for mobility-affected students, and for those who find verbal communication very difficult.
In responding to the needs of such students, academic tutors might consider the following:
- Recognition of the extra-time and physical effort required to move from one location to another
- Recognition and appreciation of the extra-time required to complete tasks / coursework etc.
- Recognition of the needs of mobility-affected students to take frequent breaks to conserve physical and mental energies
- Recognition that extra time in examinations is not a complete panacea. Such provision can be both physically and mentally exhausting, especially where a number of exams are timetabled in close proximity to one another
In terms of more specific learning and teaching issues, academic tutors might consider the following actions:
- The provision of lecture notes on the web well in advance of lectures if note-takers are not provided / available
- The possibility of extending deadlines (or providing lengthy lead in times) to cater for the extra-time requirements of mobility-affected students
- Finding alternative communication strategies (such as more extensive use of e-mail, and regular reporting of progress by weekly logs) where spontaneous verbal communication is difficult
Case Study C
Source: http://dart.lboro.ac.uk/CaseStudy-JD_001.htm (information accessed and extracted September 2008)
John is currently in the third year of a full-time PhD. Prior to this John completed a three year BEng degree in Mathematical Engineering at the same University. John has Cerebral Palsy. This affects co-ordination of his limbs, causing involuntary shaking, and also affects his speech. The effect of these physical symptoms on John is that it requires considerable time, effort and energy for him to complete all physical tasks, including walking, reading and writing.
John requires personal assistance in his academic studies and at home . During his undergraduate degree, John’s personal assistant had a room next to his within university accommodation. John currently lives off-campus, sharing a house with his personal assistant and several other students. John’s personal assistant changes approximately every 6-months. The assistant’s role includes the completion of ‘routine’ tasks such as cleaning, preparing food etc. to enable John to concentrate on his academic activity, and helping with physiotherapy exercises. Over time, John has worked to increase his independence of the need for such support.
THE STUDENT’S EXPERIENCE
Learning & Teaching Experience
John has completed his undergraduate degree and is now studying for his PhD. The case study refers in the main to his experiences as an undergraduate.
John experienced a number of barriers in learning and teaching situations. The following are some of the most relevant experiences:
Reading handouts and other written material at lectures, presented problems for John, as he has difficulty in turning pages.
John’s lectures were attended by a ‘note-taker’ who was also his academic assistant (John had the same academic assistant throughout his undergraduate degree programme). The note-taker would take notes during the lecture, organise the notes subsequently, and would arrange any back up required. The usefulness of the note-taker varied according to the nature of the lecture’s content (e.g. as a non-specialist, the note-taker found some difficulty in translating the content of, for instance, technical photographs).
Having a non-specialist as a note-taker was a two edged sword. A note-taker with an engineering background would know what was important to note. On the other hand, such a note-taker might – through assuming knowledge – not write down something that needed to be written down.
Given the above, John is more than happy with the academic help he has received in lectures, and has an excellent working relationship with his note taker / academic assistant.
Paper-based / On-Line resources
John finds moving between different levels / floors within the Library difficult. Most of the resources that he needs can be accessed on-line, but he needs assistance to access and make use of academic journals and the reference section of the library. John has a specially adapted computer to assist on-line research. He has developed specific protocols and key commands to make his use of the computer easier. He has a particular interest in computer software engineering for people with disabilities, and is considering pursuing this as a possible career.
Laboratory Work / Group Work
Laboratory work presented particular difficulties for John. His academic assistant would carry out physical tasks under John’s direction. John would have to explain how to operate the machinery despite physically not being able to do so himself. Much laboratory work was done as part of a group. Here John experienced some difficulty in being part of a group of his choice. Allocation of group tasks would be arranged to allow John to concentrate on the theoretical part of an assignment, leaving more practical tasks to his fellow group members.
Assessment / Examinations
John found exam periods particularly stressful and exhausting. A lot of preparation, planning and thinking ahead was required. John initially received ‘time and a half’ additional time in examinations. As his needs were better understood, he received ‘double-time’. John states that for some examinations even this would not be enough.
For examinations, John had the use of a ‘scribe’ (who was also his regular ‘note-taker’). Answers were scribed and required checking for errors / mistakes. Answers might on occasions need to be written out 4 times before the desired meaning was conveyed in the answer. Because of the length of time involved, John was provided with breaks for food intake / rest / refreshing thinking etc.. John describes the examination periods as being “very tiring and painful”.
Coursework would take John much longer to complete compared to the average student. This necessitated considerable forward planning, involving both John and his academic assistant, to enable deadlines to be met.
Other learning and teaching experiences did not present as many difficulties for John, and his degree programme did not involve any fieldwork, site visits, or work placement (if it had, these would have required considerable organisational planning, availability of support workers, etc.). For John making presentations was a ‘strong area’ for him, though he would need some assistance if needing to use visual material (e.g. using an over-head projector). For John individual project work provided the least problematic experience as it provided him with an opportunity to “do it my own way”.
Impact on Learning & Academic Progress
John identifies the support of his parents and professional assistants as having been vital in his success. He credits his parents for encouraging him to become as independent as possible, and instilling a pro-active attitude to life. The opportunity to occasionally visit his parents at ‘home’ gives John the opportunity to rest, relax and refresh himself.
John feels that the barriers to learning he has experienced have made his academic progress more difficult through making access to academia significantly more problematic. Additionally, integrating academically and socially with other students has not been easy. As he has always needed some assistance John feels that he has always been “different”. Nevertheless, he makes the effort to share experiences where possible with fellow students to emphasise that in many ways he is not ‘different’.
The difficulties John experiences in accessing his studies as a result of having a disability means that he has had to plan carefully how to complete tasks that for other students would be automatic. He has to find ways to adapt processes (“what normal people do”) for his specific needs. This might involve observing what others do and trying to model his actions on what he has seen. John stresses the need for “finding my own solutions” to problems. In many situations John has found that he has had to do some things differently, adopting if necessary a different perspective. In this respect, John credits his academic tutors for exercising flexibility to enable him to find his own solutions to the problems he faces. He notes that a lack of protocol or strict rules has been immensely helpful. John also praises the University’s Disability Support Office for being exceptionally helpful by providing help and support as required, whilst encouraging and enabling him to develop his independence. John summarises everything by stating that “Coping with University is very hard, disability makes it harder”.
ACADEMIC ASSISTANT’S PERSPECTIVE
John has an academic assistant (AA). AA’s role involves acting as note-taker and scribe, as well as supporting John by assisting his mobility around the campus. AA has developed a close working relationship with John, and describes how much of what he does for John is in effect a “team effort”. Of note, AA has assisted John set up a ‘filing system’ for his notes that has proved invaluable in exam preparation, and continues to be a valuable aid in the process of researching through academic journals.
AA has considerable experience of working with disabled students, and has worked with John throughout his undergraduate degree and continuing onto his PhD studies. AA has had experience of working with other students with Cerebral Palsy but feels that John is “exceptional” in terms of his ability to organise his activities in order to fulfil his academic commitments. AA also feels that John’s independence, perseverance and humour have been important determinants of his academic success.
With respect to learning and teaching issues, AA echoed many of the points made by John. In addition to these he identified some further difficulties that John experiences. These include difficulties in operating equipment such as photocopier machines, and (in respect of his PhD studies), the calling of ad-hoc meetings where AA has not been present to take notes.
AA emphasises that whilst the majority of the barriers to learning that John has experienced have been reduced (to a great extent through his self-discipline, strong planning skills, and persistence), he cannot escape the fact that it takes him considerably more time and physical effort than others to complete tasks. AA feels that a stronger appreciation of this fact from his academic tutors, coupled with some verbal encouragement, would have been a great morale booster at times. For AA, a successful working relationship depends to a large extent upon the level of communication, trust and rapport between the assistant and the student.
ACADEMIC TUTOR’S PERSPECTIVE
PS is currently John’s PhD supervisor, and was previously his programme tutor throughout John’s undergraduate degree. PS has therefore known John for nearly 6 years, and has also taught him on a number of modules.
PS was well aware of John’s capabilities prior to his PhD studies but had some concern that the nature of research work (in John’s chosen field), involving the need to write extensively and manipulate mathematical formulae, might be problematic. PS believed that the ‘usual’ research methods might present difficulties for John. He feels that while John’s research skills are very good, the difficulty that John experiences in writing things down restricts his ability to develop thoughts on paper, and consequently to develop new solutions and models. Possibly as a result John has in his PhD decided to focus on ‘algorithmic design’ (computer implementation) as opposed to ‘mathematical modelling’ (i.e. focusing on those things that he can do). PS remains concerned about the length of time it will take John to write up his thesis. Partly because of these concerns PS, as his PhD supervisor, meets John 2-3 times per week to discuss progress and work through ideas. (Typically PS would see his PhD students about once per week)
PS feels that John’s examination results have probably not reflected his true academic capabilities. For John to communicate his understanding and knowledge takes considerable time and PS feels that the extra time offered in examinations has probably not been sufficient. PS feels that the same might well apply to John in regard of drafting, revising and writing up his final thesis, with the effect that John’s final submission will not fully do him justice.
PS acknowledges that, whilst the University has been fully supportive of John’s needs, his success has much to do with his motivation and attitude. PS feels that John’s attitude to the difficulties he has experienced in accessing his studies has been ‘superb’ in that he is willing to acknowledge his disability but has always refrained from making an issue of it.
CONCLUSION / RECOMMENDATIONS
This Case Study highlights a number of issues. Whilst John may not be a typical case due to his extraordinarily positive attitude, excellent planning and coping skills, and self determination, his experiences shed much light upon the needs of students with Cerebral Palsy, and indeed, with other disabilities.
The most detrimental effect of Cerebral Palsy is that all physical activity (including walking and writing) is very difficult. Therefore the first step in responding effectively to the needs of students with Cerebral Palsy is recognition that tasks will take much longer, require more effort, and may in fact be physically painful.
This implies that academic tutors should respond by:
- Exercising flexibility in the demands placed on the student
- Enabling students to do things ‘in their own way’ (i.e. to use methods which are most effective for them)
- Providing opportunities for the student (and their academic assistants) to discuss relevant issues with them
- If required, providing advice and assistance to the student on developing planning and self-organisation skills, and other coping strategies
- Encouraging and praising students on a regular basis to sustain morale
In terms of more specific learning and teaching issues, academic tutors should consider the following actions:
- Providing extensive electronic lecture notes in advance of lectures (especially important where the student’s note-taker may not be familiar with the subject)
- Structuring groups (e.g. for laboratory work) that will enable the student to play a full part within the group but also benefit from the full range of students’ abilities, including opportunities to work with some of the most intellectually able students
- If possible, minimising the physical impact of moving between lecture theatres, workshop areas, buildings etc.
Finally, It is noted that effective communication (& rapport) between the student and academic assistant is central to the student’s success. Academic tutors have an obligation to inform the university’s disability support officers if they are concerned that problems may exist in this relationship.
Note: since this Case Study was produced, John has successfully completed his PhD studies and been awarded with his PhD.