When neglect is built in

Eating together with family and friends is an internationally accepted activity that involves being sociable, togetherness, belonging and learning about social and cultural norms.

A Swedish study of the mealtimes of people who lived in group homes or supported living found people appreciated the rare occasions where staff members ate with them.

The study found: “According to the staff, food is often a topic of discussion [among the residents], and so were requests to eat together in the common eating area to which those with supported living as well as participants living in the group homes had access. They also began talking about sharing Christmas meals early in the autumn.”

There is a refreshing example of someone living in a group home inviting a neighbour in the same home for a meal and then sharing the meal “in silence”. Restrictions on opportunities to share meals were imposed by staff when people were seen as unruly or too noisy to eat with others.

Rules around staff eating food paid for by public funds allocated to people with learning disabilities reduced opportunities for people to eat together.

This generated feelings of awkwardness on the part of staff who would sit and read a newspaper or do some other distracting activity so as not to stare at the person eating.

Some staff rejected eating with the people they supported or even using the same plates and cutlery. The study found people with learning disabilities wanted more opportunities to eat with other people although this was not always possible outside group homes.

Related to eating is the likelihood that people with learning disabilities will have no or fewer natural teeth than non-disabled people. A tendency to extract rather than fill teeth offers further evidence of systemic violence.

Edentulous – the term for having no natural teeth – among people with learning disabilities has been attributed to the overuse of antipsychotic medication.

This can leave people’s mouths dry and susceptible to decay, poor dental hygiene and resistance to dental treatment. Tooth removal is a preventable inequality which has substantial impact on someone’s quality of life, including the enjoyment of eating, yet this is rarely considered.

Neither, it seems, is the use of dentures or dental implants.

I remember reading with horror about the dental experiment the Vipeholm institution, Sweden, in the 1950s. This involved giving toffees to the children with learning disabilities who lived there – across nine years – to study the effect on tooth decay.

A largely unrepentant plaque collector from the study wrote his reflections about the experiment 50 years later.

He attributed the high number of citations the study has to the design and execution of the research. For example, the institution enabled well-controlled conditions, and the results were supported by supplementary studies.

In responding to criticisms about the ethical implications of the study, he concluded with two trite sayings: the end justifies the means, and it is easy to be wise after the event.

There is some poignancy that the unnecessary loss of teeth continues to be replicated 70 years later

While this is not the only example of the abuse of people with learning disabilities in pursuit of scientific knowledge, there is some poignancy that the unnecessary loss of teeth continues to be replicated 70 years later.

Once again, evidence generated from the harm of people with learning disabilities is used to further the health and wellbeing of the mainstream population without benefiting those who were harmed.

The children at Vipeholm also experienced higher mortality rates during World War Two because of their higher support needs around eating and staff shortages.

Again, it is not difficult to identify examples of social murder.