The Walkers: Lankelly 2
This group was established by Helen Smith. Her role is to provide psychological support to people with spinal injuries and their families. The impetus for developing the group was a response to the needs of patients. For someone working in a medical setting Helen takes an unusual approach in as much as she refuses to categorise patients, taking a very person centered approach to the support she offers. Having worked in the Unit for nearly 20 years her experience is that the outcomes for people are as diverse as the people, and their circumstances, and cannot be predicted in a simple way. The recovery trajectory for individuals seems to be as influenced by their attitude to the injury and their own recovery as by the nature of the injury itself. Therefore her approach is to take each patient on their own terms and enable them to determine what is helpful, or not. That is not to say that she does not challenge, but just that her approach is one in which she seeks to liberate their own capacity rather than impose preconceived solutions of her own. The Walkers Group comes out of this philosophy. Helen having noticed that those who recovered sufficiently to be able to walk, had a particular set of experiences and needs that was not being adequately met by the unit. She further observed, that for this group, often the best source of support was not from the professional team but from other people experiencing the same conditions. From those observations the Walkers Group was born.
Although a very small ‘community’ (in the UK around 1000 people are spinally injured every year) those who have spinal injuries still manage to create some sort of a hierarchy. Those with high level spinal injuries are judged to be the most ‘serious’ and those who manage, as a result of luck, perseverance and/or the skill of doctors and the impact of treatment, to, after a fashion, walk. This latter group can be regarded by the rest of the spinal injury community as not seriously disabled. This is so despite the fact that many of them walk with extreme difficulty and are deeply affected in a range of other ways by their injuries. This lack of clear identity also affects this group in their relationship with mainstream society. A wheel chair, a walking frame, gives a clear indication that the person using those devices had a disability. Whilst someone with foot supports and using a walking stick may be so easily recognised to be seriously disabled and therefore not seen as deserving of the same rights, considerations or courtesies as those who are. Indeed there is a perverse disincentive not to recover well enough to walk. The level of support and resources afforded someone with a similar level of injury is much higher than for those who have the strength, courage or determination (or refusal to accept things as they are?) it takes to step outside onto the street. On a very fundamental level the group provides a space for those people who find themselves as a relatively powerless minority group within a powerless minority group to get support from each other.
I say ‘fundamental’ because although this sounds a simple and obvious thing it is a hugely challenging thing to achieve in an institutional environment whose professional culture expects clear protocols and outcomes. In such a setting the Walkers Group is a strangely anarchic. The agendas are either created by the group or structured round guest speakers on particular topics. The culture of the group was variously described by Helen as “casual” and “disorganized” and even as “chaotic” and the skill in enabling it to happen down played. What was clear was the group was greatly valued by its members precisely because it informal, unstructured, and most importantly driven by them. The evaluation provided by group members evidences this. Topics for discussion could include everything from how to deal with the impact of spinal injury on sexual and bowl function to the emotional and psychological impacts of the injury, maintaining hope, avoiding self defeating behaviours to dealing with injury lawyers. If the group was more ‘organised’ it would mean in practice that it would be more externally directed and whilst this might look like more effective management this ‘improvement’ would undermine the group by taking away one of its key the values.
The group’s culture is in marked contrast to the other “patient focused” intervention provided by the Unit. A ‘goal planning’ session has been designed to provide an opportunity where those involved in the treatment and care of an individual patient can come together with that patient to co-ordinate their care. This includes medical practitioners and physiotherapists as well as others who need to be involved in ensuring a recovering person can return home and back to as ‘normal’ a life as possible as soon as possible. Although this group is understood to be client or person centered it is experienced often by the patients and their families to be nothing of the sort. The environment is one created by the practitioners not the patients and even modest attempts, such as moving the chairs into a circle, are quickly sabotaged and returned to the status quo arrangement of the professionals on one side and the patient and their family on the other. The time available to each patient is also limited to a half an hour slot and as a consequence it is easy for patients to be left with the feeling that they are being processed. The resultant dynamics are such that some patients jokingly referred to it as “going to meet the firing squad.
This culture is in marked contrast to the Walkers Group but the ingredients which make that so, we felt, are not fully understood by those involved in it nor by the person who ‘leads’ it. Partly perhaps because the very ingredients which make it possible – humility, gentleness, a willingness to let others exercise power and a lack of tendency to want to be the centre of attention, the hero and the expert, are the very things which mean that no one outside the group fully understands its value and brilliance. The further irony is that perhaps the very effort of trying to get the practice recognised in some way risks being the death of it. Looked at through this lens the increased interest in the work of the group particularly by those charities Involved in supporting people with spinal injuries and an opportunity to write up the project create both challenges and opportunities.
The very tentative lessons we begin to draw from our visits is that what works, what makes practice personally transforming at best is less to do with what can be seen or measured and more to do with the culture, the environment, feeling and experience. It also seems to be as much about what is NOT done, said or made as much as what is. It seems to us that something that was powerful in terms of culture was neutered by taking the risk of seeking success in economic terms and something else powerful perhaps precisely because it was little understood by the rest of the institution of which it was part.
This has made us reflect that rather than looking for what works what we need to do is to go and experience other people’s practice and ask them and ourselves the questions:
How do we best understand what others do, and do not do, which creates the most sustainable and powerful impact for those they work with and for?
How do we continue if can’t attract grant support or mainstream partners?
How we best ensure that any future attempts to secure other sources of income do not undermine our core philosophy and purpose?
How do we best describe and evidence the powerful but subtler differences that they and we help to make?
How do we best use this evidence and our practices and experiences to empower individuals and the whole community to have more confidence to work from our own perspective and experience and worst to reject ‘help’ which requires us to be silent, compliant or subjugated and at best influence others to in becoming more confident in their, and our, own judgement and sense of purpose.
How do we maintain the courage, perseverance and commitment to keep going?