1. The starting point: The assumption of "not understanding"
2. When "taboos" meet death and disability
2.1. Explanation in context of their social taboo
2.2. Development theory and concept of death: From Piaget to Wittkowski
2.1.1. Possible linking of the concepts
2.3. Three practical examples: People who understand death.
2.1.2. The death of a brother
2.1.3. A daughter's grief
2.4. The hubris of preservation
3. The end - A conclusion
Sources of this thesis
1. The starting point:
The assumption of "not understanding"
Through my previous work experience in a hospice, with various funeral homes and in working with people with cognitive disabilities, I came into contact with very different ways of dealing with the subject of death on the part of the employees.
One behavior that irritates me again and again is the concealment or denial of the issue of death from staff to clients on the grounds, i.e. the insinuation, that the person concerned cannot understand or "cope" with it. In my experience, the deaths of close relatives and one's own mortality are often not discussed. Such an attitude apparently always leads to a lack of education, inner resentment and thus a barrier to self-determination in an issue that is more certain to every living being than any other.
In my theory-based thesis, I will therefore deal with the hypothesis: "Every person, regardless of cognitive abilities, is able to mourn, to understand death and they should not be denied that."
A differentiated conclusion should be an appeal to social institutions in particular to break the taboo on the topics of dying, death and grief and to show possible solutions for raising awareness with regard to work, or dealing with people with cognitive disabilities and dealing with the end of life.
In the beginning, I will explain the terms "death" and "disability" in context of their social taboo, in order to then go into more detail about their connection and to emphazise the motive of the thesis. This will be followed by a more extensive discussion, which, based on Piaget's stage model of cognitive development and Wittkowski's concept of death, will use appropriate practical examples in the form of participatory observations to demonstrate that people with a wide range of cognitive abilities are capable of understanding "death".
In addition, I would like to discuss the extent to which personal fear of being confronted with death and possibly other factors motivate employees of social institutions and relatives to exercise the aforementioned reluctance towards the clients (cf. Neimeyer et al. 2003: 114-115).
Among other things, I would like to use Franke's work to justify the individual and social benefit of further taboo breaking.
Finally, I will summarize my findings regarding the need for change in the attitude towards death in social work and show possible solutions.
Ultimately, the thesis should serve as an appeal to the reader and in particular to social institutions to question the personal and professional handling of the topics of dying, death and grief and invite them to deal with it more intensively in order to gain a more conscious approach and thus to be able to support people with cognitive disabilities in a more sensitive and individual manner.
My wish is to establish a more welcoming attitude towards dealing with death. Therefore, at the beginning of my thesis, Kübler-Ross (1975: 11) seems to be reassuring when she writes:
Death is not an enemy to be conquered, or a prison to be escaped from. It is an integral part of our lives and gives meaning to human existence. It puts a limit on our lifetime and forces us to do something productive within that time while we can still use it.
2. When "taboos" meet death and disability
2.1. Explanation in context of their social taboo
To start with, I would like to explain the terms "death" and "disability" in terms of their social taboo and put them in context to each other.
The history of the relationship between the western world and how death is dealt with is ambivalent and, always dependent on formative historical events, constantly moves on a spectrum between acceptance as part of life and fearful repression.
For example, while in previous centuries it was the norm to take care of the sick and the deceased in one's own home and family environment, this approach decreased sharply with the beginning of industrialization in the 19th century and the founding and establishment of the undertaker profession. Due to the fact that conscious and intimate rituals were thus "professionalized", an ever increasing literal uncanniness developed around the topic of death. However, the "culture of silence" established over the last century has been experiencing an emancipatory change in recent decades (e.g. through the "hospice movement" of the 1970s in the USA and 1990s in Germany or the "Death Positive Movement" in the USA (cf. Gooden 2020), in which an opportunity can be seen for people to deal more consciously and holistically with the topics of dying, death and mourning (cf. Bosch 2009: 24-25).
Since the history of people with disabilities would go beyond the scope of this thesis, I would only like to compare the taboo on the topic of "disability" with the previous one insofar as many people seem to lack concrete insights into this area of life or group of people.
This can also result in bias when talking about and interacting with people with disabilities, which is often marked by prejudice.
According to the sociologist Erving Goffman, "a disability is not an inherent characteristic of a person, but only arises from social reactions such as stigmatization and taboos." (Röhm and Ritterfeld 2020: 283). While a derogatory prejudice (e.g. the attribution of the inability to "understand" death) is usually linked to a specific characteristic of a person (e.g. a cognitive impairment), the "taboo" can be regarded as an unspoken matter of course that is hardly ever questioned (cf. Röhm and Ritterfeld 2020: 282).
The result of stigmatization and taboos often means barriers in self-determination for people with disabilities who depend on a certain need for support in their life and who are denied this topic when it comes to the loss of relatives or their own last phase of life.
Against the background of my thesis, there is a double challenge: breaking down prejudices against people with cognitive disabilities and breaking down inhibitions about dealing with the issue of death.
2.2. Development theory and concept of death:
From Piaget to Wittkowski
After this insight into the topic of my thesis, I will now present the theoretical concepts used as a transition to the main part.
The Swiss biologist and developmental psychologist Jean Piaget (1896-1980) developed a theory of cognition or epistemology that consists of four phases, each of which builds on one another.
This theory is one of the best-known and most widely used in social pedagogy (cf. Thiemann 2014: 135). For a further understanding of the stages of development I refer to the book Meine Theorie der kognitiven Entwicklung (Piaget 1981).
Joachim Wittkowski (born 1945) is a German psychologist whose research and teaching focuses on developmental psychology and thanatopsychology. In his book Psychologie des Todes, published in 1990, he presented previously known empirical studies and concepts for the understanding of death, compared them with one another and compressed them into a "death concept" consisting of four main dimensions (cf. Wittkowski 1990: 47-49).
According to him, this is to be understood as "the totality of all cognitive contents of consciousness (concepts, ideas, images) that are available to a child or an adult for the description and explanation of death" and "contains a cognitive [...] as well as an emotional component" (c.f. Wittkowski 1990: 44). In the table below I have summarized the four dimensions.
Perception of a loss / stagnation
Extended: The realization that all bodily functions necessary for life cease at the moment of death
The realization that death is an irreversible condition.
The realization that death is always caused by biological or physical causes.
The realization that every living being, including a person´s own self, will die.
(cf. Wittkowski 1990: 48-49)
If all of these components are understood or applicable in an individual, Wittkowski speaks of a "mature concept of death" (cf. Wittkowski 1990: 49). However, reference is made to the already existing concepts on which what is described here is based.
Some of these are structured in much more detail and thus enable a more differentiated understanding of an individual's concept of death. Some of these sub-concepts will be mentioned later.
Understanding the concept of death as multidimensional also means that not all sub-concepts are available at the same time in cognitive development and that these do not always progress linearly with the chronological age of the person (cf. Wittkowski 1990: 67).
At this point, reference is again made to Piaget's theory of cognitive development, which Wittkowski describes as an obvious "frame of reference" for the development of a specific concept of death.