'Living with a mishievous beast’

A series of Inspirational Talks by Lauren Singer B Hons HDE MS Visualise this:
you're in a corner and a claw away from a beast with a cold, baleful eye.
Then it strikes...

Her diagnosis changed her life but, after living with her beast and learning how to adapt with it, she forged a relationship with this mischievous beast. Having been told that she could not work in the formal academic environment Lauren determined to use her MS as much as it abuses her.

Submission be damned...

“I don't have the physical ability you may enjoy, and I can't take life for granted. My life is rich.
I look at other people's lives with no envy. This is how I have decided to live my life.”

How have you decided to live your life?

Can you possibly have a richer life when there's a mischievous beast paralysing you with fear and inaction? How can you turn into a positive your fears about your career, the pressure to succeed, growing old in an ever younger world of work, the breakdown of a relationship, crime, the power crisis and, dare I say, illness?

Meet Lauren Singer...

Be inspired by somebody whose mischievous beast struck at the early age of sixteen and whose illness has given her an irrepressible vigour for life. Learn, as she has, to make music with what you have, even be it one string. The 'music' Lauren makes has been heard on radio, television and sings off the pages of three published books.

Make music with what you have...

Be creative with what you have. ..

Make room in your life for triumph every day.. .

Our work together with first year Occupational Therapy students:

I am employed as a part time lecturer in the Division of Occupational Therapy at the University of Cape Town. One of the lecture series that I am involved in is with first year occupational therapy students who are learning about helping people with disabilities / difficulties to cope with the challenges of their day to day living and self-care (Personal Life Skills). To the non-disabled person, many of these activities of daily living are non-problematic and their performance is often taken for granted. This contrasts vividly with the experience of people who are disabled in some way (as is Lauren). To them, many activities of daily living present a problem and continually challenge energy, ingenuity and character to manage.

My interaction with Lauren began some 10 years ago through an informal meeting with her at the Disability Unit at UCT whilst on a visit (as occupational therapist) there. At our first encounter I realized that there was much that Lauren could share with our students about her experience of the kind of difficulties that I deal with in my lecture series viz. in bathing, dressing, managing incontinence, expressing sexuality, communicating, moving around etc. Lauren shared readily about her experiences, and with real ‘insider knowledge’ on problems of basic care and communication, mobility, access and on how to guide others in caring for her.
So I invited her to join me for a session in the OT division to give the students some experience of what it is like to live with a disability, and for them to have the opportunity to discover/ explore options/ resources for managing the difficulties. Recognizing that the person living with the disability is, in fact, the ‘expert’ on the experience of their particular difficulties, the health professional brings her own broader experience of resources, services ‘and options from which the person can make informed choices.
It made a lot of sense to involve Lauren in teaching considering the debates worldwide about the role that people with disabilities have to play in the design and provision of services planned for them.

Lauren’s participation was always a great success with students, especially when done in the form of a visit to her home where they then obviously had the opportunity to understand her difficulties within her unique context. We then began to explore together the possibility of working in a more prolonged teaching partnership, with Lauren’s story serving as a form of case example as the students covered the different aspects of daily living affected by disability. We had over time come to see just how important it was that students understand Lauren as a person before seeing her merely as a collection of problems. This led to us conducting a research project during 2004, in which we attempted to explore the impact of the joint teaching approach on myself as teacher, Lauren as ‘disabled expert’ and the students. This involved a group of 62 first year students. Following the outcome of this study, the program has been continued in an ongoing teaching partnership in this lecture series.

So we planned our sessions together, deciding what aspects of her experience to incorporate into the teaching sessions, and how best to maximize time spent together. We read/ commented on student’s reflections on their experience of the course and always allowed plenty of opportunity for spontaneous engagement and questions during teaching sessions. As Lauren herself said in her book “
“When I was medically boarded from the university, another friend of mine advised me to make MS my career. I was shattered at the time, but what he said lodged in my mind. I have taken an extremely debilitating and frustrating illness and made it serve my purposes. I have worked with it and not against it. I have been able to turn setbacks into stepping stones”.

Working in our division teaching students and helping them to develop a fresh and healthy mindset towards people with disabilities has been part of this ‘making MS a career’. Her teaching has given her the opportunity to feed into other peoples’ lives, to feel connected both emotionally and intellectually, and to continue to be stretched personally. In her words, she felt it gave her the opportunity to “share in what the world was saying” and to live out the life meant for her.
Boredom, monotony, isolation and feelings of uselessness compound the sense of loss commonly experienced by being deemed no longer fit for work. Lauren’s new involvement gave her new hope, I believe, at a time when her future working prospects may have seemed bleak. Lauren’s participation in teaching enabled her to challenge students, to debate issues and to facilitate personal growth in the students as they integrated new insights. Some of the topics tend to be of a very personal/ intimate nature and can be uncomfortable to discuss/ engage with openly. Lauren met the challenges head on with honesty and vulnerability. At the same time she stood to gain personally from the opportunities to discuss other options for solving her difficulties.

Lauren loved the feedback that she got directly from students who were encouraged to reflect on their thoughts and feelings throughout the course. Lauren especially enjoyed knowing that she was having a ‘ripple effect’ - helping them to help others in the future.
As students reflected how they were experiencing her sharing of her ‘lived experience’, I believe that she was affirmed and encouraged to visualize new and exciting prospects for her future. Lauren often said how ‘honored’ she felt by the feedback she received. This teaching experience was for her yet another stepping stone to further possibilities for contributing to those around her. Experience and interaction naturally generates contact and with this comes a supply of new stories for her (and for Fred) that simply beg to be told.
Lauren often spoke about wanting to create a bridge between them (the students) and her, to help them to see how much they were like her, rather than only how much she was like them. She also focused strongly on utilizing strengths and abilities rather than dwelling only on problems. Fred often joined us in these informal teaching sessions, adding his bit gained from years as a professor – again extending opportunities for student learning and providing some light relief (like when he stole the students’ sandwiches!).

What did students learn from their time with Lauren?
Lauren invited student’s right into the daily experience of being a disabled person e.g. how she experiences sexuality as a disabled woman, how the frustrating and embarrassing problem of incontinence is handled, and the tricks of the trade that she has learnt to ensure that she gets the right sort of physical assistance whilst she transfers into a car from her scooter or wheelchair.
This allowed students a much deeper level of understanding and learning as their awareness about disability grew and as they questioned, commented, debated and made suggestions outside of the demands of an actual ‘therapy session’.
Students could really wrestle with issues and confront their own feelings that arose from what they were experiencing. There was ample opportunity for personal growth of each student. Strong feelings were expressed as students came to grips with the enormous impact of a disability such as MS on almost every aspect of daily life that we take so for granted. However Lauren helped many of them to move beyond the more depressing realization of this to a position of seeing possibilities and solutions.

It is difficult to express in so few words the huge range of gains for the students. Lauren engages with the students at an early stage of training, when attitudes in the health professional/ client relationship are still relatively undeveloped. Lauren helped students to begin to develop healthy attitudes, she brought practical illustrations of difficulties; she helped them to understand the many complex factors that influence how a person can be helped.. Stereotyped ideas were shattered, assumptions were challenged, and students got to learn about who Lauren was, apart from her disability. They learned how to value the person’s as ‘expert’ in the experience of their disability.

You may be interested in a range of student comments found in their reflections:

“Listening to Lauren made me more aware that people with disabilities are regular human beings”

“It really stuck when Lauren said it is not only her that has Multiple Sclerosis, so do her family and friends”

“she really made me question myself in terms of life, goals and aspirations. I thought about how I always moan about my life and disappointments and fail to see the good in it, and at times forget how blessed I am”

Students gained knowledge of the client as ‘expert’ in therapy:
“I learnt that as therapists we shouldn’t always assume that we know what to do to help others, but we should ask our clients. I really think this will be useful later, especially as a student as we rarely have the right answers”

“Seeing the adaptations that were made to Lauren’s house made me aware that there are a lot of things that can help someone who is disabled to normalize their environment

“ another thing that really stuck out for me was the issue of safety for a disabled person e.g. when going to an auto bank, and the difficulties associated with concentrating as well as seeing if there are any dangers lurking, or how to get help in an emergency”

“The thing that I learnt from Lauren that would be useful for an OT is to build a good relationship with the client. Lauren expressed that Margi had never pushed or interrogated her to do things her way, but rather built up a good relationship with the client and finding out the things they want to achieve and focus on their feelings and hope for the future.”

“it was interesting talking to Lauren about denial and how it plays a huge role in all of our lives and not just when you’re faced with what she is”

“I certainly did not expect to find such a pleasant, strong-willed woman with an unfaltering optimism. I found her attitude towards her disability realistically optimistic in that she knows her limitations and strengths and works with them in a positive way to ensure a fulfilling life”

One student was especially struck by Lauren’s comment:
“Lauren says I am disabled but I can do things”.

Student comments on their experience of the joint teaching:
” I can now see that as an OT, I can learn more from people who have gone through experiences that I may not have gone through, than I can learn from my textbook.

“I think that this has been one of the most interesting and beneficial lectures throughout our whole course so far. Having Lauren, a person experiencing the challenges that we are taught about, teach us, is a very effective way to learn. For the first time I can see practically how OTs get involved in someone’s life”

‘Actually seeing’ and ‘experiencing’ and ‘hearing from” makes learning come alive

“a key moment was when Lauren was talking and had to stop because she was too tired and couldn’t find the words needed. She spoke of it happening but I recognized how real the problem was when it actually happened. There is so much value in Lauren being in our classes – the problems she faces are not just theory. They become real when we sit and hear her talk about them”

“what really made my learning come alive was seeing the video of Lauren, Margi and Fred at Rondebosch shopping centre – it was through the video I realized how many obstacles there are in everyday life impairing mobility. The video brought the theory which we discussed before to life because actually seeing these obstacles in everyday life and just talking about them in class are very different – the videos are very beneficial.

“Today Lauren revealed that having a disability also has unpredictable moments just as all people have those moments, of not knowing what to do in a particular situation. This made me realize that as humans we all cannot do everything expected of us, just as disabled people can’t do activities which their disabilities deprive them of”
Students formed powerful images of Lauren through the way she shared her ‘lived experience’ with them. Whilst acknowledging that her life had changed and that she still had some real difficulties, she was able to impart how she applied her personal resourcefulness to manage her difficulties. This student’s comment captures the essence of Lauren: “MS is part of her but it doesn’t define her”.

“The video of Carte Blanche (TV program) that was shown to us (first one some 12 years back), really gave me a wakeup call on how Lauren’s condition has deteriorated over the years. This frightened me a great deal, however once the video had been switched off and Lauren began speaking, my entire thought process and emotions did a round about turn. Lauren was not feeling sorry for herself nor was she going to let her deterioration get her down, she was going to continue to hold her head up high and continue with leading her life in a way that makes her happy”.

In conclusion, Lauren’s contribution to the students learning was invaluable. Our research showed that personal experience of life as a disabled person integrated into the more structured teaching program enriched the students learning in ways that promoted both their personal and professional development.

“ Having Lauren at the lecture just makes everything we learn in it seem much more real. No offence to the lecturer, but it is so much better to have Lauren say: “ I would like to use this, I have trouble doing this”, than to have a lecturer say “a physically impaired person would….. Lauren being at the lecture made me see things in a new light”.

This was really a win-win experience with gains for all participants in the process. It is not an involvement that should be taken lightly as it is very dependent of creating the right climate for interaction and incorporating the accommodations needed to ensure that the disabled person can participate comfortably. Feedback was also a critical part of the process to ensure the gains for each person in the lecture series. But, that said, it is potentially an exciting opportunity for health professionals and disabled people to work together for mutual benefit.

This program continues to flourish and is an integral part of the UCT Occupational therapy first year experience.

Margaret Linegar
Part-time lecturer Division of Occupational Therapy, UCT
February 2009