In this piece for the project “A Dialogic Exploration of Gluten Ataxia“, Ruth explores ideas around rehabilitation with Professor Pam Enderby.
I talked to someone about what she thought rehabilitation was.
We talked about this a lot over the last few months. She asked me to explore with her what I saw it as, as a patient. Later I asked her to give her professional view on what rehabilitation is seen as. I think it’s very interesting.
Me: Pam, do you remember talking to me about what you thought I thought rehabilitation was? This was an interesting thing to be asked, and I’ve given it a lot of thought since then. And indeed written a poem about the change in circumstances, as it were. If you had to sum up what you thought rehabilitation was, what would you say?
P: The word rehabilitation means so many different things to different people, but fundamentally it is about a process of improving the quality of, and control over- -life. This means that it may mean different things to the professional, the individual and their family. You could describe it as a particular blend of art and science.
Me: That’s funny! I can remember saying to you that I thought that everybody was creative in different ways, and that creativity is something that we could all do, and did indeed do, in our different ways. I think maybe what you’re saying here is that there is a sense of “feeling for” for this mix, that it’s a kind of creative blend of things that need to be in place for true rehabilitation to happen. In other words, that there isn’t a kind of standard formulaic recipe for rehabilitation, but there are number of factors that need to be brought together for it to be truly effective. Am I right in this? In teaching, I’d have described this as this drawing on a ‘palette of possibilities ’.
P: Although there isn’t a formula, that doesn’t mean to say that there is not science behind rehabilitation, and considerable amount of evidence that should inform it. But there are many different components and some are more important and possible for some people in their rehabilitation than others.
Me: So what do you see the components as being in this palette of possibilities?
P: I think what I would say is that the specialist skills of the clinical professions (doctors neurologists, speech therapists, physiotherapists, occupational therapists and so on) are often required to assist with the management of the patient’s specific disorder or disease. For example, managing spasticity, where stiffness becomes a mobility issue, or where weakness or cognitive or other physical features become a challenge for the patient and their family, we use the term ‘impairment’ to describe these things. The professionals will have seen many of the physical, mental and emotional difficulties before, and will have a good understanding of what is embedded within the impairment. However, the patient has a unique perspective on their condition and what helps or hinders them personally.
Me: So it’s not just the medical disorder, is it? It’s that Big Picture that rehabilitation encompasses ?
P: In addition to managing the clinical aspects of the problem, rehabilitation is essential for maximising or extending the independence of an individual. Even when an individual has a progressive condition. There are often ways of helping them to do more for themselves and/or helping the family/carers to undertake tasks in a way that is less onorous or hard to achieve. There isn’t necessarily a direct link between the degree of the impairment and the amount that this limits activity. Helping the individual to become more independent requires interaction in the educative journey between them. This domain is often called ‘activity restriction’ or disability, but this is not a negative or absolute term it’s a relative one.
Me: Wow. That’s an idea that perhaps not many people really think about in this way. That actually, if they did (and we take Stephen Hawking, for example) we might want to explore how he has achieved what he has, and done so much, we can see how, if disability was seen through this ‘activity restriction’ lens, then this might help us to reconsider seeing ‘limitations’ that our expectations (or assumptions) about what can be achieved. Most people do this by a kind of self-comparison, which I know, from personal experience, is a painful concept to unpack with people. I like what you’ve said. It makes sense to me. And gives me another vocabulary to help me with this change in circumstance.
P: A third domain, ‘participation’, is central to rehabilitation; it refers to the ability of the individual to participate in society to having more autonomy and control over their life. This may be to do with returning to work, undertaking useful and interesting recreation/ hobbies, participating and/ or having more control over their own choices at home. A colleague taught me in my early career that this domain is related to ‘making life worth living’ and in rehabilitation we need to stimulate that light bulb moment!
Me: For me, what is key, particularly, is keeping mentally active. Participation strikes me as being something that is both generated by the person themselves, but also actively encouraged -and anticipated- by others as well. I guess it’s a kind of push pull, pull push model, where the drivers for participation can be arising from a person’s individual needs and motivation and goals, as well as those around them having needs and motivation and goals for that person.
P: You have hit the nail on the head! Participation requires a true ’joined up’ approach, which should make the management of all this so much more effective. I would say that the partnership between the patient, family members, the doctors, nurses and therapists is essential, as is good communication and respect between all. Barriers to participation may not be identified or appreciated but sometimes can be removed quite easily.
Me: I can see why it is a mixture of both art and science— what else is involved in rehabilitation?
P: An additional domain that is so important is ‘well-being’. It is an issue in which true partnership is required.— The journey from being able bodied to being disabled or limited is one that needs a great deal of support, friendship and encouragement.
Me: For me, wellbeing, as I am beginning to discover, has several layers to it, and this it is that blend of psychological comfort, safety and security being in place, with the sense that what is happening is helpful, supportive, authentic and ultimately helpful. And perhaps replicable, so that others can experience and share a sense of well-being both as patients and as the professionals caring for them. I guess it’s a cross between that French saying ‘feeling good in one’s own skin’ and the phrase ‘all is well in the world’. One thing I have learnt is that it isn’t just skin deep or tokenistic. It taps into something profound, positive – and universal.
P: Doctors and nurses and therapists and all those involved in rehabilitation are aware that these four domains are frequently independent. We have seen many individuals who have what might be considered a minor impairment— but it has had it is devastating impact on their social participation or well-being. Conversely there are those with very severe impairments have autonomy over their lives and strong sense of well-being.
Me: For me Impairment is a really interesting and still something I have not yet got my head around. Again, going back to Stephen Hawkins, we can see how impairment is a relative thing, and much can be achieved for an individual whether impairments may be perceived as minor by some, or something that has huge impact, perhaps as hidden disability, which in some ways cannot be perceived as being as damaging as it is. The huge continuum of impairment is something that, when it’s measured or rated against the other domains, makes it something that society signals real tensions over. It’s going to take a lot more work by society as a whole to understand the interplay between these four domains.
P: There is much research related to the many diseases underlying different disabilities, but there is also a substantial amount of research related to rehabilitation– but rehabilitation is not about science alone—Oh goodness! I’m repeating myself here— but it is about partnership and a shared journey, perhaps as we have done in choosing to travel on the trams here!
Me: Thank you P. I’ve learn such a lot through our correspondence and get-togethers, and felt I’ve learnt an awful lot about the thing I think that others have described as Patienthood, which, when I came across it, intrigued me. Hearing you talk about these things has helped me come to terms with my condition, and not just to see it through my eyes but to attempt to see it through the eyes of family, friends and colleagues, and indeed others on the tram. I will never forget when for the first time I saw the word ‘mortality’ in an email to me. That was for me strange and scary thing to see. But it’s been these little nudges that have helped this process of internal processing, meaning that I could begin to get my head around these things, and begin to take some steps forward. I must also add that you have been most patient Dear Reader for me when some fairly mawkish poems that landed in your Inbox, as part of this growth of renewal and acceptance.
Thank you P. It’s your stop next!
P: But one never gets off in rehabilitation! The driver changes!