Introduction
One of the shadow aspects of our job is to acknowledge that humans can be cruel, disrespectful and thoughtless with others. We do meet, get to know and appreciate people who often have had traumatic experiences in their past, with some of them experiencing multiple traumatising circumstances. For those growing up in former institutional long stay hospitals it was common for being fed and quiet (and sometimes clean) to be prioritized over human dignity. That space within a loving home where you are allowed to communicate, make choices, express yourself, develop and show your own personality was distinctly lacking and is unfortunately, something historically true for a lot of countries.
Even though the over-riding protection systems have profoundly changed and there are committees, organisations, trusts and charities around to protect and fight for their rights, the attitude towards people with complex needs is often still tinged with unawareness, thoughtlessness and sometimes frustrating and shocking ignorance. I am sure that each of us have much to reflect upon and learn, and there is a much-needed focus on research which takes the experiences of people with complex needs and learning disabilities seriously, involves them and is genuinely motivated by a hope for improvement in their lives and independency.
As we can’t change individual’s past experiences nor how much someone might be still guided and influenced by them, we have to work with their expressions and find creative solutions to work within the limitations that may be present due to their opposing needs.
I will be sharing three case studies which illustrate occasions when we have encountered these criteria, and how we embraced the situation.
Premise and background
The situations/settings where the people we see are more likely to get triggered/distressed during our sessions are as follows. These are not in an order that reflect their importance. Different people struggle more/less with different situations and it will most likely vary depending on their stress levels at any given time.
TRANSITIONS Any transitions relevant to the person e.g. between rooms, between tasks, to / from lunch to having company / being alone.
RESTRICTIONS You can’t leave the house, can’t have food now, can’t shout.
Reinforced by harmful practice in the past.
DEMANDS “You have to do … now!” “You have to eat this.” “Go wash your hands.” “Put this on.” (said with tension and command)
PROXIMITY/TOUCH Washing / getting dressed etc, close seating positions while eating, personal care, *enforced.
*Enforced does not necessarily mean forceful. E.g. you have to get dressed at a certain time of the day even though you are close to a meltdown due to having had nightmares. You have to have breakfast even though your stress levels are still high from getting dressed. This is often connected to and exacerbated by closer proximity to others and can lead to shut down/melt down and not processing food correctly. Gastro-Intestinal issues can be triggered by eating while the body is still in fight/flight mode. And so on…
- Sometimes these things are unavoidable within the residential home system. We want to offer activities and therapies to the residents, so they need to be ready at a certain time. We want to give them opportunities to meet others in a day centre and the bus collects them at a certain time. There are structural and practical reasons why needs can’t always be met in the best possible way, but they should still be perceived, noted and for there to be an attempt to find the best solutions.
- Sometimes people have no personal space of their own to go to when overstimulated.
- They maybe can’t physically reach their room on their own or the staff member ratio isn’t high enough for them to be in their own room.
Transitions
Meaning any transition between rooms, between two activities or between being alone and having company etc.
Often the people we see have a different experience with food, clothing and showering/bathing due to their senses becoming overwhelmed quickly or processing the input as challenging or as pain. Sensory processing disorder can heighten all situations, as an anxiety spiral might be put in place on top of potential trauma triggers (Compounded stress signals).
Restrictions
A limitation of food and/or drink, limitations to going outside (weather based or because the resident can’t leave without a staff member)
You can imagine how someone who has previously been subject to restrictions to their movements that were reinforced by punishment, physical harm or restraint practices (We know of one person who had to stay within a painted border on the floor on his own within a room of other people for example) or whose food was withheld as punishment, might be more inclined to have a strong response to similar limitations now. This is likely to be the case even though it is now to keep them safe and they get more than enough meals in the day. Being told “No”, in both cases, can be a trigger for those traumatic experiences.
It is important to remember that the role of the care giver is not primarily “how do I get them to do x?”, it is about how to support them to see value in this thing we have to do, and the connections between A and B. For instance, if we wash your bed linen, they will feel soft and cosy again. I would never be motivated to spend part of my weekend doing laundry and drying it etc if I didn’t appreciate this meant I was able to wear my favourite clothes fresh and clean the week after. If the connection is missing, I would not do it. We also perhaps sometimes need to accept that things important to us, are so because it’s something we have learned as being respectable in society. Someone who has no understanding of these unspoken rules and doesn’t mind their clothes not being washed regularly might never develop a motivation to do so. They may need other incentives. Many of us are motivated to dress a certain way by the appreciation we receive from others. We take this appreciation as a personal achievement, as we were the ones that chose the clothes and put effort, energy and often creativity into the process of dressing and matching things to our personality and/or the demands of the day ahead.
Some of the people we see might never get appreciation for the way they look/dress, or were not included in the process of choosing their own clothes. This can potentially be further disempowering (they might quietly disagree with the choices made and maybe even dislike the clothes they are wearing), so why would they bother?
Demands
In the broadest sense, the request to someone to compete any task can be viewed as a demand. If in the past there has been a harmful level of punishment associated with the task’s ‘incorrect’ completion, it is very possible that a similar demand made now might spark anger, and/or fear and, over time with repetition; anxiety. This may occur even though there is no suggestion of punishment, and is complicated further by the fact that the concept of ‘correct’ can vary from carer to carer, making essentially every task unpredictable to the disabled person. People who have grown up in unpredictable environments may show anger instead of fear, and this can in some ways be considered a survival mechanism as it makes the person appear less vulnerable. ‘Pathological Demand Avoidance’ could be part of the bigger picture of someone not being able to fulfil tasks, although the term ‘Pervasive Drive for Autonomy’ is perhaps a more accurate way of describing what is actually going on, as it focuses on the repetitive strain on the nervous system by input outside the individuals’ control. This naturally evolving need to do things autonomously to prevent the repetition of loss of control, self-determination and loss of nervous system function (which results in meltdowns and shut downs) is understandable, and as the term comes from the neurodivergent community themselves is a useful update.
It shows this pattern to be a necessary protective response cleverly provided by a brain and body that is nearly constantly under strain. This switch in perspective is important to protect the self-worth of the person and to show them their body is not working against them but with them, even if the outcome can be difficult for both the person themselves and others in daily situations and communication.
For disabled/neurodivergent people there is often trauma connected to functioning in a certain way, especially when being constantly compared and held to standards of non-disabled people. Even if they “fulfil” the demand, it might not be fulfilled to the standard the non-disabled person is expecting, and might not be praised and celebrated to a level that recognises the effort that has been made.
If everything done is constantly undervalued and under celebrated, motivation to do the things being asked is lost and finding other ways to get celebrated or receive otherwise big responses from the people around me become priority. Much more attention is often gained by disrupting the routines and rules that are built to benefit others.
For adults with complex needs it can be quite difficult to know what they are capable of and what is an over- or underestimation of their skills. One of the people we see, let’s call him Ren, seems to have complex understanding of some social situations. If I ask him to please put on his shoes by only speaking to him using words, he doesn’t seem to be able to follow through. Whereas if I show him the shoe and tap the leg it goes on gently, he will not only put his shoes on but often on the appropriate foot as well. Finding out what exact prompts someone needs and where their understanding of spoken words is failing, rather than their willingness to do something, is an essential step to avoid frustration on both sides.
The same is true for breaking down tasks. Most people we support need much smaller, simple steps to follow, and the key is to celebrate every step and not being focused on the end result (similar to math equations where we obtain points for the different steps to get to the end result).
https://goblin.tools is helpful to get an idea on how many steps even simple seeming household chores have.
Proximity, Personal Space and Touch
We know that long term institutional care in long stay hospitals was, in most cases, very different to the care delivered in residential community homes nowadays. The term “care” was filled with different actions and values, with a different mind-set and subsequently different tone and behaviour towards the people in their care.
Factors influencing long stay hospital standards of care.
- A too small staff team, typically 1 ward manager and 3 or 4 care assistants providing care for 24- 30 residents.
- Historically no distinction between learning disabilities and mental health conditions.
- Asylums used for those who didn’t fit societies mould, including mothers of illegitimate children.
- A lot of people with different learning disabilities, complex needs and mental health conditions in one, big room together. Building structures and capacities were favoured as “holding” spaces for huge capacities of people rather than meeting individual personal needs. The big rooms ensured that a smaller number of staff members could “keep an eye” on more people and that a lot of people could stay there. (Picture one big room with 30 beds instead of 2 beds or 4/6 beds per room. One big room where everyone would dine. One big room for everyone (again picture 30 people or more) to spend their day between meals. The people living there were always a very mixed group with overlapping and opposing needs, and we can all easily picture the chaos and even danger that could erupt between people due to a lack of activities, staff members and overall consideration of needs.
- Some people self-harmed due to sensory overload, or possibly harmed others due to the tense circumstances and a triggered fight response.
- People with a need for constant movement were given marked areas within the room they were allowed to move in and were literally not allowed to “Step out of line”. So called “Behaviours” that were seen as an “eventually could result in a threat” were sanctioned heavily and early on, without an explanation, to avoid conflict of any kind. Physical holding, pacifying medications, food withholding and other similar practices were a normalised part of the process and used as control due to fear of escalation.
Due to these systemic issues, paired with a fundamental lack of knowledge of people in general, as well as learning disabilities, autism and different mental health conditions, staff members and institutional leaders reverted to “Control over Care” to keep people “physically safe” as much as possible, without much understanding that Care was actually the minimum needed to create a fulfilling and complete life.
Many of the people Us in a Bus see today, have lived their childhood and youth in these hospitals, and while not all of them have PTSD (Post Traumatic Stress Disorder), some do, and most are sensitive to bathing times, touch, proximity, food/drink withholding (some might be seemingly obsessed with tea for instance) sudden noises and more. Many may still be trying to be heard, to make up for attention they didn’t receive when they were younger.
Historic experience
I will include an example here from someone who worked in one of the long-stay-hospitals for three years, to illustrate how situations could and did escalate, leading to the disabled person being disadvantaged, constricted and/or emotionally and physically abused.
While this might be hard to read, I think it is necessary as a means to:
- connect compassion with knowledge of someone’s lived history,
- see where care has been evolving
- create awareness regarding where we still have improvements to reach for/strive for.
“I worked at Normansfield Hospital from 1986 to 1989, for the first year of this as a domestic assistant/cleaner, the following two as an OT assistant.
Circumstances for the male only ward I supported initially were depressing at the best, abusing at the worst. I must add it was slightly different on other wards. This one was for the men who exhibited “challenging behaviour”
- Individuals did not have their own clothing. There was a shared wardrobe/shelving that housed pj’s and day wear. 50% of the residents didn’t make it into day wear. 20% remained naked. Consequently, clothing did not fit and was completely impersonal
- Shower facilities were shared
- The area with baths in had three in and they were used together. No privacy/dignity
- A pot of tooth brushes in the middle of the bathroom that everyone used.
- No access to drinks/the kitchen
- Dormitory sleeping
- No personal possessions
- One especially complex man occupied a separate room with glass walls that was positioned adjacent to and visible from the day room. No curtains/privacy “for safety”. Clearly staff (and therefore other residents) were terrified of him. He was not locked in, but was always naked and prone to “attacking” other people.
Perhaps the worst thing I witnessed was a man managing to engineer an escapade out of the day room and into the kitchen to access the newly prepared drink of tea. (This was prepared in a huge aluminium tea pot). In a few seconds he had lifted the teapot spout to his mouth and was pouring scalding tea into his mouth and down his front. He was spotted very quickly by a care assistant who intervened. He was extremely reluctant to relinquish his tea pot, so she hit him hard on the back of his head with a metal soup ladle.
Other examples of unhappy care were.
A young woman who had extreme muscle spasm and spent most of her life on the floor. She did have a moulded wheelchair which I was involved with measuring her for, but could only access it if she had her muscle relaxation medication at the correct time. When she was in it, she had a totally different view of the world and loved it! Probably 80% of the time she didn’t receive the medication at the correctly spaced times so didn’t use it. Consequently, she was fed lying down and often choked.”
For me, the first part of the statement makes me think more of a prison than a hospital. While philosophies and guidelines might have differed in the different institutions at the time (1986), in practice, people lived under similar physical restrictions and with similar losses to their human rights. The difference of course being that in the former one is experiencing an enforced punishment usually following a misdemeanour, and in the latter your birth determined your experience, there is no choice or power and is only due to physical or/and mental differences to what was seen at the time as “the norm”.
We need to be mindful of “the norms” of our time and to question them, listen to disabled and neurodivergent people’s experiences and thoughts wherever possible and let them lead in developing better living situations.
Luca Grys, Interaction Practitioner July 2026
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