By Carol Thomas
On a recent holiday I was getting to know some of the people that I was travelling with. I was asked the question about what I do for work, and I would reply with a synopsis of our charity and the Intensive Interaction sessions we facilitate with people with learning disabilities and complex needs. Then I would add in some general anecdotes to illustrate the way we work with people. I always initially focus on the moments of positivity, and the resulting smile, or moment of ‘ah ha’ we see in people when we respond to their own personal language by echoing their sounds or mirroring their movements and draw them from their internal worlds. The overall responses from the travellers were always the same. “Wow, that must be highly rewarding work” and yes, without a doubt, it is. I wouldn’t have worked for the charity for the last ten years in some capacity if that weren’t true. There are moments that touch us deeply, such as the time one of the gentlemen we visited seemed close to phonetic approximation when vocalising my name. Perhaps he was trying to say something else, we will never know, but that moment felt personally meaningful and has stayed with me.
Each of us has any number of these anecdotes which we share with one another in the office or in an anonymised way on social media. They sometimes form the basis of our ‘unpicking sessions’ where our practice manager facilitates a reflective session that addresses things that did or didn’t work well, are causing anxiety, cause us to doubt that we’re fulfilling our purpose or triggering professional insecurities. We then apply Kolb’s learning theory to approach future moments in a more productive way. (Kolb’s learning theory was developed by psychologist David Kolb & describes the process whereby knowledge is created through experience. In a cyclical way, the four stage process looks at concrete experience, reflective observation, abstract conceptualisation and active experimentation in order for it to be transformed into effective learning).
We work with people either on an individual basis or in groups with the aim of exploring sociability, connection and communication. There are also times when we are able to utilise more unexpected, ‘by chance’ moments of connection during a session. I will share one such example here.
My colleague and I have been visiting a woman and a gentleman, who live in the same house, since December 2023. We see them separately for half an hour each on a 2:1 basis. Although they live together, we have rarely seen them interact, they simply seem to occupy the same space. Our aims for Shelly (name has been changed) have been to explore her communication and promote her well-being/ self-value. For Alan (also name changed) they have been to support connection and interaction so that he can replace some of his more isolating behaviours with new abilities. Our individual sessions with them have been very different and, whereas Shelly seems very interested in exploring different items with us, Alan’s focus has always been an I-pad or computer, a seemingly more solitary and reclusive activity. Initially for both we have utilised the principles of Intensive Interaction and engaged with them by using their own interests as a way to develop a connection. This has worked well and, over time we have established the basis of our relationship with them in this way. The physical space they occupy overlaps in the dining area, a room they both obviously use throughout the day. As luck would have it, they were actually sharing the same space on our arrival one week. We utilised this opportunity to forge an interest in one another. With a subtle invitation to engage, Alan came over and joined us at the table, resting his head on my colleague’s head at one point, where we then shared a brief but harmonious moment of group connectedness. Alan leaned forward onto the table, so my colleague and I mirrored this. Momentarily we were all doing it together, with Shelly seemingly leaning in too. As a song played on the radio and Alan mouthed the words, we joined in singing along. Alan smiled and Shelly laughed as we ‘attempted’ our very exaggerated, powerful singing. One of our aims is to create connection and this moment perfectly crystallised that.
One of the other high points of our job is in the moments when home staff/carers observe what we do, we explain why we are doing it and they then utilise the same principles when working with the person they are supporting. For example, we have been seeing a man, I’ll call him Alex, for an hour-long session since April 2024. He is a very tactile man, who doesn’t seem interested in objects or equipment, being more focused on people. In fact, he loves nothing more than giving people a hug. This simple act can have a few underlying reasons he may be seeking to address. A hug can provide a sense of safety & reassurance. Deep pressure from a hug can be soothing and help with sensory processing. It has a calming effect on the nervous system, lowers the stress hormone cortisol which in turn reduces anxiety and tension as well as providing proprioceptive input (it gives a predictable, grounding sense to those who struggle with body awareness. It can purely be an emotional connection. If verbal communication is limited (as it is with this man) then a hug may be a way of expressing needs or emotions. It can also be part of a daily routine and as such grounding to that person. Finally, it may also ease discomfort or anxiety. If we were to withhold this and decline to reciprocate a hug, it might cause feelings of distress, dysregulation, isolation & disconnection for that person. Fortunately, staff at Alex’s home have observed our interactions and with this information felt more confident to embrace hugs with him too, resulting in a positive impact on their relationship beyond the boundaries of our session time.
In contrast to the highs mentioned, there are moments that are not so positive. It is a known fact that people with a learning disability have worse physical and mental health than people without and their lifespan is less than the average population. Mencap quote the following on their website –
On average, women with a learning disability die 23 years younger than women in the general population.
On average, men with a learning disability die 20 years younger than men in the general population (LeDeR, 2023; ONS, 2022).
Death is something we all experience, it is a part of human existence. As an organisation we have been visiting some people for their whole lives. In fact, Us in a Bus was set up in 1990 in order to provide leisure and communication opportunities for those in long stay hospitals, and we continue to see some of these people to this day, although sadly not all. We have had to say farewell to our fair share of individuals of whom we have become very fond along the way. Part of our three-monthly team meeting is dedicated to remembering those that have sadly died since our last training week. Not only do we deal directly with the deaths of those we visit for ourselves but also need to support the mourning process (whatever that may look like) for those that lived with them. (To discover more about this, see the article ‘We All Grieve’ by Ve Grys on the resources page of our website). The world is imperfect and there are times when the news of someone’s death is delivered as we arrive for a session, expecting to see them, and when everyone there is in their own state of shock or disbelief at the freshly learned news. We offer empathy, understanding and compassion while juggling our own internal shock.
The finality of sessions doesn’t always come because of a death. The harsh reality surrounding our developing relationships with people is that sometimes funding is withdrawn or homes close. For the people we visit, the processing of any ending is frequently facilitated more unsatisfactorily than it could be. During a recent training week ‘unpicking’ session, we focused on how we could better approach the occasions when an ending is inevitable and time to support understanding limited. How can we best support the people that we see to know what is happening and ease the processing for them. Our purpose, to reduce anxiety at these times, informed our discussion and we came up with ideas such as social stories with specific language to better inform the people we support of an impending end, along with visual timetables and final certificates to acknowledge the person’s participation in our sessions together.
And then there are those outlier situations, such as the Covid pandemic, that created its own challenges for our organisation and the people we support. Mencap cites examples from families whose loved ones with a learning disability were previously independent and confident prior to the pandemic and had ‘lost their life skills’ afterwards. Anecdotally, we also recognised how many had regressed in their self-confidence and self-esteem during these unprecedented times. We can only hope that this isn’t something any of us have to experience again, but life throws a curveball every once in a while and, rather than dwell on the negatives, we must focus on the positive outcomes of such unexpected times.
My aim with this article was to give a balanced view of the highs and lows of the job. To express in simple terms what makes it rewarding and to give an insight into the challenges that can counteract this. Ultimately as long as we use the ‘lows’ in a reflective and productive way the highs will always outweigh them and it will continue to be, what Janet Gurney termed a ‘privilege’ to work in the way that we do, with the people that we do.
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