From The Rainbow Machine: Tales from a Neurolinguist’s Journal by Andrew T. Austin.
A person can become quieter without becoming better. The distinction is easy to lose in an institution where an orderly day is one of the things staff are trying to achieve. Behaviour that fits the organisation’s expectations may be welcomed as improvement even when the person has lost something important.
“Word Salad Dave”, a short chapter in The Rainbow Machine, grew out of my time in a residential psychiatric setting. It raises a question that extends beyond psychiatry: when we say that somebody is doing better, whose experience are we describing?
An attractive building can contain a controlling culture
The residence was a large country house with impressive grounds and space for roughly a dozen people. Some residents had lived with mental health difficulties for many years. The arrangement was intended to provide support within a community rehabilitation programme, including opportunities to make ordinary choices about everyday life.
My experience of its working culture was much less attractive than the surroundings. I saw a strong expectation of conformity to the person in charge. Approval, disapproval and the mood of management seemed to exert considerable influence over what residents and staff could do.
These are my recollections of one setting, not a description of every residential service. What concerned me was the gap between supported living as an aim and controlled living as an experience. The building could look generous while the person’s practical freedom remained narrow.
The life that management does not see
Groups of people develop a culture that is partly invisible to those supervising them. Schoolchildren can pass information through a school long before the adults notice it. Students living together create jokes, alliances and shared understandings that do not appear in the official rules of the accommodation.
A psychiatric residence is also a group of people living together. It contains humour, creativity, irritation and everyday social invention. If every unexpected event is interpreted through illness or disobedience, the ordinary humanity of that group can disappear from the account.
Dave spoke in a way others found difficult to follow, hence the descriptive name used in the story. He also laughed, giggled and wandered about doing things that seemed amusing to him. His behaviour included putting a budgie cage up a tree and adding chips to the fish tank: fish and chips. The surrounding events had the quality of the absurd dramas that can develop in any shared household.
That does not mean that animals or residents should be exposed to harm, or that every act was harmless simply because it was funny. It means that understanding what happened required more than placing it in a category called psychiatric disturbance. Practical problems could be addressed without losing curiosity about the people involved.
When Dave became quieter
After an incident was treated as a transgression, Dave was medicated. What I observed afterwards troubled me. Previously he had been active, expressive and apparently amused by his world. Afterwards he sat quietly, said little and appeared much less emotionally engaged. Staff described him as stabilised.
I did not experience that change as an obvious improvement. I saw a substantial loss in his presence and expression. The account does not provide the drug, dose, prescribing rationale, complete clinical history or Dave’s own account of the effects. It cannot settle every clinical question about that treatment. It can preserve the observation that the institution’s satisfaction did not answer the question of his quality of life.
Medication can be important in treating psychosis, and unwanted effects deserve attention rather than being accepted as the price of a quieter environment. NICE’s information on antipsychotic medication describes both treatment benefits and possible side effects, with decisions discussed with the person. Concerns about sedation or other changes belong in a clinical review, not an unsupervised decision to stop treatment.
A diagnosis must not become the whole person
I connected Dave’s situation with R. D. Laing’s idea of the person becoming a non-person: present within the system, yet no longer heard as someone with an individual position. In everyday language, a person who has a diagnosis can become the diagnosis. Their name, history and reasons are replaced by a category.
Consider someone who is angry about an injustice. Without a psychiatric label, listeners might ask what happened. With the label, the first question may become whether the person has taken their medication. The possibility that the complaint is accurate has been bypassed.
Illness can affect interpretation and behaviour. That does not make every objection a symptom. A person may be unwell and also have a valid complaint about food, privacy, staff behaviour or a decision affecting their life. Listening to the content and assessing the clinical situation are compatible responsibilities.
Good intentions need a visible outcome
I do not assume that the people working in these systems want to cause harm. Many are trying to help. The difficulty is that an institution can translate a good intention into a narrow measure of success. More treatment, more completed forms or fewer disturbances can stand in for a better life.
The test needs to include the person’s experience: what they can do, what matters to them, what choices they retain, what distress has changed and what costs the intervention has introduced. Staff convenience is relevant to running a service, but it cannot carry the whole meaning of recovery.
During my own employment, challenging a practice could make me unwelcome. I was dismissed from some roles and left others when continued conflict seemed likely. These experiences shaped my concern about systems that reward agreement and remove dissent. When those who question an established approach disappear, the apparent consensus becomes easier to mistake for evidence.
The woman asked to fail another memory test
A separate experience occurred in a community day-care rehabilitation service. On one morning, older people with longstanding mental health histories and additional cognitive difficulties attended so that their families or carers could have some respite.
One woman was very confused about her situation but appeared content. She had tea and a biscuit, the television was on, and other people were around her. I was instructed to take her away and carry out a memory assessment. I asked what useful decision the assessment would support.
My concern was that I would remove her from an agreeable morning, ask questions she could not answer and confront her with her difficulties, without a clear benefit being explained. The answer I received concerned the requirement to complete the forms. I refused, and my refusal was interpreted as failing to do my work. I was later dismissed from that unit.
I cannot establish what happened to her after I left. Nor does the incident mean that memory assessment is inherently pointless. Assessment may be important in understanding a change, identifying needs or planning care. The disputed issue was its purpose on that occasion, its repetition and its effect on the person.
What will this assessment change?
A form should help care happen; completing it is not automatically evidence that care has improved. Before asking someone to undergo a potentially difficult assessment, it is reasonable to ask what question is being answered, how the result will be used and how the person will be supported.
NICE’s principles of person-centred dementia care place the value, individuality and perspective of the person at the centre of practice. Those principles provide a useful way to examine a routine without assuming that every routine is either necessary or wrong.
The questions remain concrete. Has the person become more able to participate in their life? Have they been heard? Has a distressing effect been noticed and addressed? Can staff explain the benefit of what they are asking the person to undergo? These questions keep the person visible within the work.
More from The Rainbow Machine
Browse the Rainbow Machine article index for related writing on identity, care, communication and institutional assumptions.