ALL SYSTEMS SUCK!

In disability organisations, it is service users themselves who have the very least amount of power and influence, and yet they are the reason why the service exists in the first place, argues Siobhán MacCobb

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It is a fact of life that by the time a hierarchical organisation grows to be able to deliver its founders’ mission, the ground has shifted and it is out of date. And, more importantly, the organisation then takes on the mission to continue its own existence and prosper. Layers of defences are built into its systems and structures, policies and procedures, in order to maintain organisational stability and clarity for the organisation’s membership, and to affirm its own standing against threats of incompetency from the outside world. Our building societies and banking system are a good example of this.

Workers are limited to only part of the responsibility of the overall mission and they do not take ethical responsibility for the overall workings of the organisation. For example, why do we have dirty hospitals? Is everyone responsible to keep the hospital clean? Apparently not. Some doctors and nurses do not wash their hands following patient contact. Yet are they sanctioned for this? Posters in hospitals advise patients to ask doctors if they have washed their hands. One wonders if this is to help patients feel powerful or to feel more at risk of harm. Are nurses told to ask doctors if they have washed their hands; does the cleaner remind the nurse to wash her hands? Hierarchical systems do not work this way. So, instead of having everyone in the hospital really take on the responsibility for keeping everyone safe from further infection, a new position is made with responsibility for safety statements, policies and procedures, staff training and monitoring cleanliness.

Thus with the division of labour, ethical responsibility is split. The individual may make his commitment to washing his own hands, but other than that it is someone else’s job and responsibility—with the limitations exposed when the next inspection review is published.

What has this got to do with disability organisations? Are they any different? The founders established their service in the very different Ireland of 60-100 years ago. Is their main function now to keep themselves in existence? They would argue that they undergo regular renewal, and that they update their services and practices in keeping with identified changing needs of their service users. Not all organisations are the same. When staff meet together to share their experiences, they will surprise each other with the differences in values and expectations for service users.

The author writes, ‘Management teams dissociate from the experience of lower ranking staff, which in turn dissociate from the disabled people they are supporting.’ Hierarchical organisations use the division of labour in a way to split responsibility, power and contact with the service user. Those on the lowest salary level spend most time with service users. Those who spend most time with the service users also have almost the least amount of influence and power in the organisation. However, it is the service users themselves who have the very least amount of power and influence, and yet they are the reason why the service exists in the first place.

Advocacy and self-determination have been buzz words for the last ten years, and disability organisations have established advocacy policies and procedures. However, to some degree, advocacy is an outcome of a process of personal development that emerges as children and adolescents learn skills and develop attitudes to lead self-determined lives. ‘The component elements of a self-determined life include choice making, decision making and problem solving skills; goal-setting and attainment skills, self-management skills; and self-advocacy and leadership skills, as well as perceptions of control and efficacy and self awareness’ (Wehmeyer, Shogren, Zager, Smith and Simpson 2010: 477).

Advocacy groups of service users participate in shared meetings with management, and make presentations at national conferences about having their voice heard. However, with rights comes responsibility and service users are not given or supported to take responsibility for their day-to-day lives, or expected to make their own unique contribution to the disability organisation, their family and community. Hierarchical organisations do not appear to want frontline staff or service users to learn about power sharing and individual and collective responsibility: the very experience necessary for democratic citizenship. Autonomy and self-determination can be seen as functional outcomes of the person’s experience of self-efficacy, and having opportunity and supports to practice self-management, choice, and self-regulation in daily life. Those in most contact with people with disabilities in services are frontline staff and other service users, and they have the greatest potential influence on self-determination. If services are serious about self-determination, the relationships between these influential people have to foster and sustain self-determining philosophy and practice in every encounter with the organisation and its service routines and practices. The role of management is to support this.

Together people have to learn to take care of themselves and of each other and grow as members of a shared community, rather than as a cog in a wheel, or as a person who is prevented from having their voice heard by other more vociferous service users.

‘Autonomy and the agency that derives from it can only be made possible by the human relationships that nourish it and the social infrastructure that supports it’ (Lister 1997: 114). The author expressed her concerns about the nature of the human relationships in organisations, particularly when distress and despair are not accepted as valid feelings and experiences from living with little power and autonomy in making a meaningful life for oneself-

Bandura’s (1994) concepts of self-efficacy as the person’s beliefs about their capability to accomplish things that matter for themselves, and influence events that affect their lives is a fundamental component in self-determination and self-advocacy. Beliefs that a person can influence his own life, and manage one’s own feelings and behaviours are influences by experiences and observations of successful others. The most important factor is the experience of mastery in doing things that matter, and this builds a robust sense of self- Failure undermines it, especially if failures occur before a sense of mastery is firmly established. However, if the person only experiences easy success and quick results, then resilience is not established. Therefore, a variety of challenging experiences at the right level are important from early childhood.

The second method of creating and strengthening self-belief is through the vicarious experiences provided by people who are similar to oneself, i.e. social modelling. The observation of success by people considered to be almost the same as oneself in a particular way influences the person’s belief that if the other can achieve this, he can too.

The third method is that of social persuasion by others that the person can succeed if one tries harder to master skills and situations, and this success in turn improves self-belief. (The converse of this is also true: if the person has been persuaded that he lacks capability, he tends to avoid challenges and give up quickly.) By limiting the opportunity to experience success, and by undermining motivation, disbelief is established and the person then has a low sense of self-efficacy and takes a passive stance in his own life.

When considering the experiences of the person with a unique profile of abilities and differences from the mainstream people he is surrounded by in early experiences in the family and in education, it is easy to see that a positive sense of self-efficacy may not be established and may remain diminished through the person’s life in services, unless active measures are taken to address this. Bandura (1994) highlights that the person also partly relies on somatic and emotional states in judging their capabilities, and stress reactions and tension may be interpreted by the person as unpleasant and linked with a feeling of vulnerability to poor performance. When considering the many health issues that people with disabilities face as children, and the attention paid to their disability as a source of distress, it is easy to understand this impact on self-belief.

The child with disability, like any child, needs help to understand and manage his own feelings and frustrations and without language this is difficult to understand. Particularly, those with sensory processing problems find it difficult to self-regulate their feelings of anxiety and discomfort and become easily overwhelmed and need to be taught strategies to self-manage. Unfortunately, the dominant discourse of ‘behaviouralism’ as appropriate for those with an intellectual disability does not address the importance of the experience of the self as the one who can prevent being overwhelmed or disorganised, and that one can develop self-mastery, self-determination and self-advocacy. Those with unique profiles of ability need personally-tailored supports to learn to manage their inner arousal states, and their basic human needs for communication as part of pro-social routines that will keep them connected in a nourishing social environment for continued quality of life. Distress must be expressed and structured opportunities offered for the person to learn to deal with it through healthy expressive routines and processes. Staff and other service users have to support the belief in coping. Spaces may need to be designed to support this, not as punishment, but as a place to experience equilibrium and self-containment. Individuals can learn healthy routines to self-calm, and to bring themselves to places that work for them in sustaining emotional stability. However, a programmed approach fitting a ‘sensory experience’ into the timetable is a far cry from this.

Self-determination status is impacted by environmental (social, cultural and physical) factors to an equal or perhaps greater degree than by personal characteristics including measured intelligence (Wehmeyer & Garner 2003) An increasing number of research studies examine the role of environment in promoting or limiting self-determination (REFS). A question has to be asked about the role of those determining these routines.

The author writes, ‘Disabled organisations lose the ability to work relationally. That is to consider self with other (De Young 2003). They also lose the ability to mentalise (Fonagy, Gergely et al. 2004). Human beings are essentially meaning-making and relational beings that seek to understand relationary experiences.’ This raises the question of the vision offered of the person with disability by staff when designing daily routines. What relations are expected between the people involved, where does the power and decision making lie? Why do people ‘go to services’ anyway, as opposed to services ‘being with’ the person? What choice and responsibility is there to do something different with one’s day? Daily routines can be the most potentially life affirming experiences for us all, because they provide the possibility for mastery, novelty, challenge, relaxation, affirmation and personal satisfaction. Consider the wonderful world of the toddler who is an active agent in his own life, with the things that matter to him within his sphere of influence. The toddler is not interested in paying the mortgage, getting a good grade in an essay or keeping a job. His interest is in being able to move about and explore the world from his vantage point and skill level. He has what he needs close by. As a teenager his valued routines, objects, people and spaces will be different, as will his intended sphere of influence. However, when considering routines, objects, people and spaces and the intended sphere of influence in the daily life of a significantly challenged person with a disability, it seems that these are decided by paid professionals based on untested assumptions of what is good for the other.

People with intellectual disabilities benefit from personalised structured supports, focused activity and process analysis, and often environmental adaptation, so that they can learn about themselves and their relationship with their world. This world is perceived uniquely by the person, and is totally related to the experiences of the self with self, and then with objects, others, and places as the person grows from the inside outwards, and to some degree gets beyond the self (as in Maslow’s concept of self-actualisation.) Do we examine daily routines from this personal growth perspective? There is a potential role for the occupational therapist in this, but only in the context of a whole-system approach and one that does not see that the problem as residing in the individual.

What methods are in place to examine the perspectives of management, professional teams and frontline staff on the worldview of the person with a significant disability. What systems are in place for continuous reflectivity on their role in orchestrating the daily life interactions between service users and the social environment of disability services? Is the use of time legitimised for the slow process of listening to each other, including service users themselves listening to each other and taking responsibility for themselves?

The author writes about ‘the pain of a life unlived’. However, at the present time there are many with ‘lives unlived’, as they wait for someone to get them a job, sort their misery, pay their mortgage, mind their children, fix the economy. Hierarchical thinking takes away the sense of being the most active agent in one’s own life. Yes, we all have stresses, and some people have exceedingly unfortunate realities. However, the rest of us are so busy with our own situation that we do not take notice. At times, it seems as if life sucks too. But we always have some sort of choice about what we pay attention to, and how we find pleasure in the daily routines and contact with people who matter most to us. Self-determining people are resilient, and can feel achievement in overcoming and/or in accepting reality of a life that sometimes sucks.

With regard to the financial restrictions now hampering disability organisations, my view is that this is an opportunity, not a threat. Why are people segregated from normal life, why do we not support capacity in people, families, friendship groups and communities to support people with disabilities in the messiness of daily life? Why do we think of them as vulnerable in every action and place? We all have our moments of vulnerability, but mostly we take care of ourselves emotionally and physically. But we do not support this learning of self-management in the ‘vulnerable’ and always take away responsibility for the self- It is interesting that for people with intellectual disabilities we ‘dissociate’ self-management and management by others in every single aspect of their lives and we establish services and organisations to ensure this. At the same time, we shout about advocacy, but it is rights without responsibility.

Hierarchical systems do not serve citizenship well, but as a society we have sanctioned this. We all suck!

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