Multiple Multisensory Rooms: Myth Busting the Magic

Myth Busting the Magic

Joanna Grace

• Publisher: Routledge
• Year: 2019
• ISBN:
  9781000691993
• Edition: 1
• Topic: Pedagogía
• Subtopic: Dificultades de aprendizaje

Multisensory rooms are widely used across the country in schools, care settings, hospitals and homes. Even settings such as football stadiums and airports are installing multisensory environments. Nevertheless, a significant lack of effective research has led to a sense of unease around sensory rooms. This crucial book explores the use of multisensory rooms in order to ease that anxiety; taking the mystery out of multisensory rooms, and supporting the reader to reflect and make the most out of their space.

Key features include:

• Guidance on creating sensory spaces on any budget, to suit any level of need.

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• An overview of the history of multisensory rooms, and a detailed exploration of the actual way in which the rooms are used today.

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• A framework for evaluating existing practices and equipment, in order to maximise the potential of the room.

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• A focus on the practitioner as the most important piece of 'equipment' in any sensory room.

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Written by a leading sensory specialist in a fully accessible way, this book is an invaluable tool for anybody who uses, or is considering using, a multisensory room.

Section 1

Now back to the story… . Where did multisensory rooms begin?

Orientation

The value of looking back into a history where multisensory rooms did not exist might not be immediately apparent. However understanding the past helps us to appreciate the circumstances under which multisensory rooms originally emerged. The practices we currently follow, and the understanding we currently have, has grown out of this history.

Reflecting on the practices of the past and the drivers of changing attitudes enables us to better evaluate our own position today. We are not separate from the history of provision for people with profound disabilities; we are a part of it.

The coming four sections offer the briefest of sketches of how people with learning disabilities were provided for in the past and of how people’s attitudes towards them have changed, shaped by the cultural understanding of their day, just as our own attitudes now are shaped by the cultural understanding of our day. We are the people of tomorrow’s past. What will people looking back on us think of what we do now?

The institutions of the past

Think back to the days of the institutions: big buildings constructed on the outskirts of town where shamed mothers hounded by their families to do the right thing brought their children and left them there. Mothers giving birth to a child with a disability were told that it was for the best that they should let the child die, “poor little mite, what kind of life would it have anyway?” These places seem far away in the depths of time but actually they are really quite recent.

The reasons for the abandonment of children changed through time: the child was sick, or subhuman – not really a child at all. The child was a danger, polluting an otherwise pure bloodstream, the child was a burden on the family and the society. The child was the problem and if the mother were to do the right thing then the child should go. Children were left outside to perish. If the child lived the mother was told to discard it; “take it to the institution and forget about it, never speak of it, you can have another baby.”

People with certain disabilities, for example epilepsy, were considered cursed, with seizures commonly being understood as the devil working within someone. The community as a whole would reject the child who experienced a seizure and place enormous social pressure on the mother to dispatch the child to the institution for fear of the consequences having the child live among them could reap.

These responses to children with disabilities were not the individual prejudices of uneducated or overly religious sections of society – they were enshrined in law. The 1913 Mental Capacity Act in the UK demanded that the feeble minded of society be identified, rounded up and locked up. Teachers were asked to identify imbeciles in their classes so that they could be institutionalised. The act saw close to 40,000 individuals locked up.

Although reading about the 1913 Mental Capacity Act now seems horrific, it was actually a part of the progress of the time; it used terms like idiot and imbecile to distinguish people from one another, which was a step on from what had happened previously. In 1886 the Idiots Act had distinguished people with mental illness from people with a learning disability. Further steps in identification were movements closer to a recognition of individual identity.

In 1902 one of the first institutions for people with learning disabilities was set up: the Sandlebridge Colony (later known as the Mary Dendy Hospital, closing finally in 1986) for the permanent care of the feeble minded. The Sandlebridge Colony was considered progressive, for now the community had a place for their rejects.

The practices of the past

In institutions through the 1920s to the 1950s you would expect to see staff treating the people living within their walls with distain, contempt and cruelty. Were the people working in these places somehow uniquely unpleasant, or if we had lived at that time would it have been us?

We all operate against the backdrop of a wider social understanding. At a time when people with learning disabilities were not considered human it is no surprise to find they were treated as unhuman. Think how you treat a fly, or an ant crawling over your picnic – animals you consider to be less than human. This is how you treat something “subhuman” and they did the same as you do for those living things whom they met who were “subhuman.”

In old photographs it is common to see people tied to pillars and posts by their bedsheets. We see people chained to their beds, or simply with their arms bound behind their back by sheets or straightjackets. Staff deployed binding as a means to prevent people from injuring themselves or one another, or from taking part in activities staff considered wrong. If you work supporting people with learning disabilities now you can probably recognise who those bound people would have been.

We recoil in horror that any human could have been so callous to another human being. In our minds we attack these torturers of a bygone age. But perhaps our mental energies would be better spent wondering about which of our current practices will be looked back upon by people forty years on from us and condemn as being inhumane. For we are not so naive to think that progress has finished with us, are we?

1890 saw the rise of eugenics, and with it came the notion that we should keep our bloodlines clean – dispensing of people who contaminate them in any way through sterilisation or segregation. Eugenics is now commonly associated with the Nazis; however it was popular in all countries at the time, and its philosophies only really began to fall out of fashion in the 1940s when the full horror of their conclusions began to be revealed to the world.

People with disabilities were one of the first populations the Nazis sought to exterminate in death camps. Indeed much of the technology used in the death camps was trialled and developed through experimentation on people with learning disabilities. The infamous T4 programme began with the killing of people with disabilities in 1939.

Whilst other groups at the time were not so blatant or organised in their application of eugenics as the Nazis were, they were still operating with a similar understanding. Medical practices sought to fix the brains of the mentally deficient, and people in institutions could expect to be subjected to horrific medical procedures. As they were “subhuman,” it was acceptable to test new ideas in medicine upon them, from exposing them to new drugs to performing experimental surgery on them which could lead to further disability, excruciating pain, and of course death.

Knocking someone out with medication was considered to be a way of resetting their brains. Teeth were pulled out because they were considered to harbour dirt. Electrocution was common place as a “treatment.” People with disabilities were routinely sterilised. To this day we still consider it radical to “allow” people with learning disabilities to have children. These times were not so long ago; they are the soil out of which our current practice grows.

A past touching distance away

The 1886 Idiots Act might sound a long way off in history, but the 1940s and the 1950s are still in touching distance from us. In 1946 just as the notions of needing to purify the bloodline were petering out, a group of parents came together to form the National Association of Parents of Backward Children, an organisation which later became known as Mencap. “Backward” was the progressive label of the time. These parents wanted better institutions for their children.

The image that came to your mind when I first mentioned institution, of a long room with metal framed beds and white sheets, is probably one from this time. That room you imagined has no toys in it. The children in the photo stare out at you with empty eyes. These children are put outside for “fresh air” at six in the morning and not allowed back inside until nightfall. At night they are not permitted blankets as they were not considered to be safe for them.

If you inspect the image of that room in your mind closely you will notice a grated drain runs down the middle of the room: this is their toilet. Were you to be able to step into that photo, you would be hit by the stench coming from that drain and from the urine-soaked bedding and the generalised neglect.

You are not looking into a dim and distant past; the image you saw in your mind’s eye was in black and white, but there are colour photos from this time too. The last people to be sent away to institutions against their will, locked up because of their disability, were sent in the early 1980s. This is the very recent past.¹ And it is from this past that our current understanding and practices spring.

The children in your imagined photo are disciplined with pain. Still considered subhuman or severely subhuman, administering pain is thought to be the best way to educate them. Again, rather than gasp in horror at the actions of people operating during a different era, consider your own life. Might you slap the dog or the cat if it peed on the carpet? Do you know a friend who would? Pain as discipline is acceptable for animals. Treatment of things not human has different moral boundaries in our minds. What moral boundaries do we have in place now that separate “us” from “them”?

If the children did not eat their dinner staff held their noses to force them to open their mouths and then pressed the food inside. If they were sick staff forced them to eat their own vomit. Again these barbaric practices of the past are perhaps not so far away. In my time as a teacher in a special school and as a consultant working within special education I have met many staff who in response to certain actions or “behaviours” adopt a “make them do it” approach, forcing the “naughty” individual to tidy a mess they have made or perform a movement or act they clearly do not want to perform. Early in my career I was involved in the force-feeding of a child, informed by staff senior to me that it was in the child’s best interests. Grimly, as I was editing the manuscript for this book, Birrell (2019) reported staff of a residential care setting who had forced a resident of that setting to eat their own vomit. These staff members escaped without criminal prosecution and the service as a whole, which constitutes a big business enterprise, was fined just 4,000 pounds as a penalty for the cruelty inflicted by its “care” staff. The barbarism of the past is with us in our present.

Forcing of compliance is viewed by the members of staff as a strategy for healthy, robust discipline. Many believe we need more of it, not less, attributing a perceived increase of behaviours they find challenging to a lack of strong discipline. If you operate a task-based framework in your mind then forced compliance counts as success. After all, those people pinching the noses of children did achieve the task of feeding the child, just as forcing a child to perform an act achieves the performing of that act. But at what cost?

The structures of the past scaffold the present

It is not only our ideas that reflect the history of provision for people with learning disabilities; the structures around us do too. In the 1960s buildings designed to house people with learning disabilities reflected the medical model of disability held in high regard at the time. They were designed to be sterile medical environments with easy-to-clean surfaces and bathrooms without toilet stalls to make monitoring residents easier. The classroom in which I taught in 2009 had adjoining it a stall-less bathroom with a windowed door so that I could easily observe my students going to the toilet. The set up is the same today in 2019.

Staff in the institutions separated themselves from the people who lived there by wearing uniforms and displaying name badges bearing their professional roles. Many education and care settings today require their staff to wear clothing or lanyards or badges that clearly distinguish them from the people they support. The them-and-us-ness of our outward presentation can be justified in a multitude of ways, as was the wearing of white coats in the 1960s institutions.

The institutions we look down upon were, in their day, heralded as developments in provision for people with learning disabilities by stalwart campaigners of the day, such as Dorothea Dix, who as early as 1850 campaigned for better treatment for people with disabilities and believed that the institutions would offer that through training and medication.

We need to know where our ideas come from. To be reflective of our current position we need to understand in what it is founded. There is no dividing line separating us from the past; we are a movement from it. To look back and think of those historical practices as different from our own, as opposite to us, is to lie to ourselves. We are an extension of all that they did.

The past, as with the present, contains both good and bad. Here is a positive reflection from the past: Dr Edouard Seguin, who lived his life within the 1800s (and who under a pen name wrote about Victor the Wild Boy of Averyon), argued that developing the muscles and the senses would enable people, regardless of their intellectual deficiency, to obtain more control over their central nervous systems and wills (Seguin 1866). We can hear his words echoing in our own justification for using a multisensory room today.

The institutions of the past are the backdrop against which multisensory rooms first emerged. Those institutions are not consigned to history. There are still people living today in the institutions they were sent to as children. In the Seismic Sensory Project²I worked with one such individual who has lived over 80 years of her life within the boundaries of an institution. Of course her institution no longer has the same name, but what does a name change mean to her? The walls are the same walls she has lived her whole life within, stained with the memories of her childhood.

The Winterbourne View Scandal in 2011 brought into the public’s consciousness the continued existence of abusive practices within “care” settings, and a succession of subsequent scandals have demonstrated that the problem is far from being solved. A recent example is @JeremyH09406687, known as Bethany’s Dad, who took to Twitter in October 2018, successfully using social media to highlight the plight of people, including his own daughter, who are deprived of their freedom in assessment and treatment units.

Globally we continue to witness provision reminiscent of that we experienced decades ago. Many cultures continue to deem it the right thing to do to kill a disabled child at birth. Many countries hold institutions within them to contain disabled people. I provide advice to people working within institutions in Europe where people with profound and multiple learning disabilities are kept in the basement, deemed not to need access to the outside world or light through windows because they are not physically able to respond to it and who live out their lives unvisited by family members who consider their presence in their family as a source of shame.

The institutions are very much still a thing of today, as are the thought patterns of the people who worked in them. Both may have changed dress slightly – the walls may be painted a different colour, the thoug...