Losing someone is difficult, but it can be even harder for people with disabilities. This is because, the research shows that we do not often prepare people with intellectual disabilities to handle grief and loss. In fact, in worse case scenarios there is a tendency to assume that the grief/loss won’t impact them at all. This is called “disenfranchised grief” and it essentially means that a person’s experience with grief and loss is not recognized or acknowledged by other people; which also means that the person won’t get the needed support to cope with grief and loss. This means that their overall mental health will be negatively impacted.
In general, death is a difficult thing for society to talk about. It is a topic we often avoid, so it makes sense that we would have a hard time talking about death with people who have disabilities. This reason parents/caregivers/staff do not prepare people with intellectual disabilities about death include:
- They worry that the individual won’t understand the concept, so they don’t bring it up
- They worry that talking about death will increase the risk of difficult behaviors
- They don’t think that they are not capable of helping the person with the disability through the grief, so they avoid it.
The problem is, not talking about grief/loss and not preparing people with disabilities for grief and loss can negatively impact their overall mental health. In fact, many people with disabilities may develop “complicated grief” (a longer lasting and more debilitating type of grief than normal grieving), because they aren’t prepared for the loss. Let’s look at why our reasons for not supporting someone with a disability through their grief may not be the vest choice:
- The caregivers/guardians/staff worry that the individual with the disability won’t understand the concept, so they don’t bring it up
- We need to presume competence. There is a tendency to assume that someone with a disability does not understand complex concepts; we might base this assumption on IQ or we might base it on what we observe. However, it is ableist to assume that someone’s IQ correlates with their intelligence and their ability to understand concepts. There are numerous books/articles/blogs written by people with disability that show profound intellect.
- Even if someone does not understand the concept of death, that doesn’t mean that they aren’t impacted by the loss. You don’t have to have a high IQ for loss to impact you.
- The caregivers/guardians/staff worry that talking about death will increase the risk of difficult behavior
- This is known as diagnostic overshadowing, it is when we think that a behavior simply occurs because of their disability. When this happens we don’t address the core reasons for why the behavior is happening– which means that the behaviors will often continue. If someone is displaying aggression because they are stressed that their caregiver passed away, addressing the grief/loss is going to do more good than our typical behavioral strategies (i.e. token economies, extinction, etc).
- Some research has shown that talking about loss/grief makes the person with the disability feel supported and less likely to engage in inappropriate behaviors. Thus, the behaviors that we see after a loss may be happening because they aren’t feeling supported in their grief, not solely because of the grief.
- The caregivers/guardians/staff don’t think that they are capable of helping the person through the grief, so they avoid it.
- Research shows that many individuals with disabilities can benefit greatly from a simple supportive environment and more intense therapy may not be needed if they simply have that. If all that is needed is a supportive person, we ALL have the knowledge and capacity to support individual with a disability through their grief. One research article said it best when they said, “Grief itself is not pathological and it is a normal part of the life course, staff/parents/caregivers should be capable of offering, accepting and giving honest support” (Clute, M., 2010 p. 167)
How can we help people with intellectual disabilities through grief?
- One of the most important ways to help someone through an upcoming loss is to involve them in the rituals surrounding death and loss. This means that we give them the opportunity to go to the funeral, visit the grave site, etc.
- Let the individual help you memorialize the person they lost- a book with pictures of fun things they did together, write a letter to the person you lost, organize a charity event if their honor if they passed away from a specific reason
- Bibliotherapy and reading books about death/loss. Sometimes those books can give us a script if we aren’t sure how to verbalize things
- The book below is one I really like:
- Normal their feelings. All responses to grief are normal. Anger is normal, numb is normal, sadness is normal and peace is also normal. It is so important to normalize all the feelings surrounding grief and it is important to normalize their unique path.
- Empathetic listening. Just listen and sit with the person in their grief.
- It is also important to know that even with these supports, some individuals with a disability will need to receive more intensive counseling from a trained professional.
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For more information, check out these articles:
- Bereavement Interventions for Adults with Intellectual Disability: What Works? By Mary Ann Clute (2010)
- Beyond Silence: A Scoping Review of Provided Support for Grieving Children with Intellectual Disability or Autism Spectrum Disorder by Maria Bonin, Lilly Augustine and Qi Meng (Journal of Death and Dying 2024)
- Supporting People with Disabilities Coping with Grief and Loss: An easy-to-read booklet By Hrepsime Gulbenkoglu 2007