Everyone should have the opportunity to grieve, including people with a learning disability. Yet people with an intellectual disability can be the ‘forgotten mourners’ during a time of bereavement and great sadness.
We all grieve in different ways. But being a part of a group and the social rituals around death is an important part of coming to terms with loss and learning to adjust to life without someone.
Specialists who work closely with people with an intellectual disability agree that everyone has a right to know when someone significant in their lives has died and be a part of the grieving process.
In a paper first published in 2000, Dr Kevin T. Blake, who is an authority on Specific Learning Disorder, AD/HD and Autism Spectrum Disorder (ASD) in children, adolescents, and adults wrote: “One emotional concern that has far too often been overlooked in adults who have for the first time been diagnosed as having learning disabilities and/or ADHD is that of grief.”
He has described grief as the “forgotten emotion” of people with special needs.
Some people may hold back on sad news, because they feel it will be difficult to tell a person with an intellectual disability someone has died. This may be because they are concerned that the person will find the news distressing, or they are concerned it will trigger a reaction that could be difficult to manage. It could be that they are unsure whether the person has the capacity to understand what they are told, or simply assume that they don't.
Coping with loss and with change
For some people with an intellectual disability, the death of a close loved one may mean that they also face adapting to unsettling changes, from the provision of care and support, to the place where they live.
For someone with a learning disability, grief can be a highly complex emotional journey, with the need for support and reassurance along the way.
Many carers have the best of intentions, with the idea of ‘protecting’ people from difficult news, assuming ‘they wouldn’t understand’ or wishing to avoid emotional or physical outbursts.
“All of these rationalizations make life easier for the care provider, but much more difficult for the individual with developmental disabilities,” writes Alejandro Moralez in a paper for the University of New Mexico School of Medicine.
“It is very important to understand and help individuals with developmental disabilities to go through the grieving process, because they often have a hard time showing and dealing with their grief.”
“People need to understand that people with a learning disability not only have a right to be told when somebody dies, but a need to process their grief,” says Sue Read, Professor of Learning Disability Nursing at Keele University in Staffordshire, England.
Professor Read is behind the development of an app called PicTTalk, which helps people with a learning disability to communicate their feelings – and ask questions – about bereavement, loss and change.
This app is engaging a community of people in a world that has too-often assumed: “They wouldn’t understand.”
Not only is the app supporting people with an intellectual disability through grief, it’s been created by working in co-production with people with learning disabilities who helped design the images it features.
“People with a learning disability can teach us so much about how to support them,”says Professor Read.
“But we have to start talking about sensitive topics with them, in order for them to tell us.”
Being a part of the community that’s grieving
Being a part of the sadness shared by a family or community when someone dies is an important part of the grieving process. Grief and the way that we express our feelings is unique to everyone.
However we grieve, being included in a group that has experienced the same loss can help us to accept and process things better during a time of disbelief and sorrow.
Professor Read says this social context is “crucial” during a time of grief that enables everyone, to be a part of the loss.
Being excluded or ‘protected’ from this ritual, can leave people feeling disenfranchised from the group, or even fear that they have been abandoned by the person who has died. This can make it harder to for people come to terms with what has happened, when they are eventually made aware.
Professor Read has witnessed the painful grief of individuals who finally learn of a death that has been kept from them for years. This adds to the complexity of grief, with no one else for whom the shock is raw to share the experience with. Other people with an intellectual disability who've been 'protected' from a bereavement may have lived with feelings that they had been unloved or rejected by a person who had, in actuality, died.
Saying goodbye - being involved
Saying goodbye to someone is one of the important stages of grief that we share with other people.
Having the opportunity to view the person who has died may help some people with a learning disability to understand what has happened. But it is very important that attending a visitation is something that they want to do.
A funeral is also an opportunity to say goodbye and understand that someone we loved has died. Some people with a learning disability may prefer not to attend a funeral, while other people welcome the chance to be involved in planning the funeral, helping with tasks including choosing funeral flowers, songs or funeral hymns or contributing something special for a celebration of life. Such rituals affirm the death and provide an opportunity for shared grief.
Signs of grief
People with an intellectual disability can express signs that they are grieving, or signal that they are finding it difficult to cope with grief, in many different ways.
If someone cannot express themselves verbally, a change in habits or certain types of uncharacteristic behavior may be a sign that they are grieving. Self-injury, anger, loss of appetite, restlessness, a need to be with you, or destructive behavior can be among the signs that someone is finding it difficult to cope with their loss.
In a situation where everyone is trying to cope with grief in their own way, it may be helpful to seek family therapy to ensure that everyone is supported. Music therapy may help some people with a developmental disability to process, express and communicate feelings that they are unable to put into words.
Talking about grief
Each and every one of us has a different capacity for taking in information. If you know the bereaved person well, you may already have a good idea of how they process and remember the things you tell them.
Some people receive new information better if they are given news in smaller chunks. Sometimes people may ask you to repeat the information you have given them. They may ask you about this, over and over again and that’s okay. Be patient and open to talking and sharing comforting stories about the person who has died.
Terminal illness, death and grief can be complicated, sensitive subjects for all of us. For some people, difficult topics may be easier to understand within the context of people, situations and feelings they are already familiar with.
When someone dies, we can sometimes talk about death in an abstract way: “They have gone to a better place” or “they passed on.” This kind of language can sometimes be confusing. Try to explore ways of breaking difficult news using words and phrases that can be taken literally.
In fact, people with a death positive philosophy believe it’s healthy for us all to use fewer euphemisms and be more matter of fact about the part death plays in our lives.
Talking about grief in words and pictures
Storyboards, memory books and PicTTalk are ways of communicating difficult subjects and sharing feelings that people are unable to verbally communicate, or find hard to express.
The pictograms in the app can be used by people to have a conversation, or build a story around how they are feeling about someone’s death and what will happen next.
Memory books and memory jars with photos, drawings and tactile keepsakes are also tangible ways that people can remember the person who has died.
The process of making a memory book can be a good way of talking, or expressing feelings, about someone who has died. This can be comfort during the time that a person is grieving.
Emotional or difficult times at other stages in life can also bring back memories of someone we miss. Kept in an accessible place, a memory book or memory jar can be something to turn to, when situations bring a loved one who has died to mind.
When Dad Died. This picture book is part of a series by Books Beyond Words to help people with learning and communication difficulties to explore and understand their own experience of grief. The series also includes the titles When Mum Died and When Somebody Dies.
Clinician Irene Tuffrey- Wijne is a specialist in palliative care for people with intellectual disabilities. On her website, Breaking Bad News, she provides guidelines for family and carers to gauge the level of information that someone’s given, so that it is not too difficult to understand or overwhelming.
Irene Tuffrey- Wijne has also co-authored a book called How to Break Bad News along with Sheila Hollins who co-wrote the Books Beyond Words series, for parents and caregivers supporting someone with an intellectual disability.
Supporting People with Intellectual Disabilities by Professor Sue Read is an academic book which explores contemporary theories and practices around bereavement and learning disabilities.
I Have a Question About Death by clinicians Arlen Grad Gaines and Meredith Englander Polsky has been written in words and pictures for children on the Autism spectrum and with other additional support needs. It explores what happens when people die and how things may change. It's a book that can be quietly read or looked at alone, or to read aloud and talk about.
Remembering Lucy is a picture book for sharing with children with special educational needs aged three and up. It’s about how Joe thinks about all the wonderful things his friend Lucy did, to help cope with his feelings of sadness after she dies. Author Sarah Helton is a specialist in special educational needs, with a focus on loss and bereavement. This book includes a guide for teachers and support staff in schools to talk about bereavement, grief and loss. Sarah is also the author of A Special Kind of Grief, a complete guide for teachers and carers supporting bereavement and loss in special schools and other special educational needs and disability (SEND) settings.