Living with a mishievous beast |
Working with the students |
'Living with a mishievous beast’
A series of Inspirational Talks by Lauren Singer B Hons HDE MS
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.
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.
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.Why Lauren?
Although it is appreciated that Lauren’s particular problems and context cannot possibly represent all people with disabilities in South Africa, many of the problems that she experiences are common to people with different disabilities and so there is still much to be gained even with an individual focus on her perspective.
There are thousands of people with disabilities, many of whom could likely make an outstanding contribution to the training of students in the health professions. As I came to know Lauren through our interaction, I found her to be extremely receptive to the idea of contributing to student training, she has a wonderful ability to engage with people, to share her personal story, whilst at the same time, remain open to what she can also learn from them. Her humour is also legendary! Having previously worked at UCT and pursuing a special interest in the doctor- patient relationship, she seemed ideal for such a teaching partnership. She also had a special gift of teaching, using not only her mind, but also her heart and soul.
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 “
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.
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.
What did students learn from their time with Lauren?
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:
“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:
Student comments on their experience of the joint teaching:
“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”
“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.