Dealing with death and bereavement is a struggle for everyone, but it can be even harder for people with a learning disability
Most of us don’t talk about death. Two thirds of people agree that the British are uncomfortable discussing it, according to a survey carried out for the Dying Matters Coalition. The research, carried out last year, also found the majority of people use euphemisms to avoid using the words ‘death’ and ‘dying’.
So it’s hardly surprising that, as one of the most marginalised groups in society, people with a learning disability have historically not been involved in conversations about either themselves or their loved ones dying.
“I used to find that people were experiencing the death of their parents and no one was talking to them about it,” says Noelle Blackman, acting chief executive of Respond, who has done a great deal of work around loss and bereavement for people with a learning disability and set up a specialist loss and bereavement service in Hertfordshire in 1997. “They were finding themselves in respite care with no explanation.”
In the last century, when many people with a learning disability lived in long-stay hospitals, they usually weren’t told that their parents had died – visits just stopped.
Families also often neglected to explain to their relative with a learning disability why a loved one wasn’t around anymore. “I think they were misguidedly hoping they wouldn’t understand the loss and would forget,” explains Noelle.
For years, no one believed that people with a learning disability grieved. But of course they did, and sometimes their grief was reflected in their behaviour. “They would become withdrawn or they might become angry or depressed,” explains
Noelle. But no one recognised the link until the publication of Maureen Oswin’s book ‘Am I Allowed to Cry?’ in 1991.
Since then, bereavement in people with a learning disability has been widely researched – within the academic world, at least. There are still family carers who don’t accept or don’t recognise the signs of grief – especially if they are delayed or different to their own experience. Some find grief in general just too difficult to deal with.
Others want to protect people with a learning disability from being sad – but they are actually making the death harder to deal with. Because no one is talking to the person with a learning disability about what’s happened, they believe they aren’t supposed to have these feelings and keep them bottled up.
“Families can also lose an opportunity to prepare someone for an expected death,” says Noelle, “so the person experiences a sudden death, which is much more difficult to recover from.”
A workable model
However difficult it may be, people with a learning disability should be told what’s going on – in any situation – as long as that’s what they want. Irene Tuffrey-Wijne, a senior research fellow at St George’s, London, has developed a set of guidelines for breaking all kinds of bad news – as well as news of a relative’s illness or death, this might include the news that the person themselves has a terminal illness. “Breaking any bad news is similar,” she says, “even running out of jelly, for some people, is devastating.”
Irene thought previous models were not suitable for people with a learning disability. “It’s not a single event,” she says. “It’s a whole process of helping somebody understand the changes in their life.” A one-off doctor’s appointment or meeting with a manager is not the best way for someone with a learning disability to digest bad news – they need to get small chunks of information in their own environment.