Loss within the Disability Community

I recently experienced loss of someone I knew from one of my social groups I am a member of. Let's call him A. A was sweet and always smiling young man. A probably understood the world in ways other people couldn't. A passed away on Sunday at the age of 17. A was entirely too young for anyone to pass away. Because of his passing, I'm reminded of the unique loss within the disability community. 

Grief can take many forms. Grief is described as a loss of some sort, psychological distress, confusion, shock, yearning, and/or anxiety about the future. Loss takes many forms within the disability community.

​Some examples include: 

• Loss of physical health or mental capacity due to aging or disability ​
• Loss of caregivers/parents/family members or supporters who work individually with the person with a disability
• Loss of those within the disability community (activists, friends, social media influencers, etc.) 
• Losing a job, retiring from work, changing homes 

We also must recognize that older people with developmental/ intellectual disabilities may have a cumulative loss. Cumulative loss can be referred to as multiple losses in a short period. In people with disabilities, we must look at a loss within a person's lifetime.Some things to think about if you support someone with a disability

• How well do you know their life story?
• How well is their history documented?
• Are you aware of significant events that happened in their life? 
• Does the individual have a way to express their feelings and experiences?
• Are we seeing ways to get access to this information?
• Are we discussing their histories with essential team members? 

What can grief look like? 
For individuals with developmental/intellectual disabilities and autism, grief can be hard to understand and/or difficult to express. They may also struggle to make sense of loss. They may have difficulty finding the silver lining or benefit of that loss. They may need extra support during that time, and whoever is taking care of them may not be able to know how to support them. There is not much research about those with intellectual disabilities and whether or not they can find the benefit in the loss or if they're unaffected by it. 
A study conducted by Harper and Wadsworth found that over half of the respondents with a developmental disability reported at least one death that was very disruptive to their lives; more than a year after the deaths, the majority of these respondents were still suffering from feelings of loneliness, anxiety, and sadness, as well as from behavior problems. I think this study points to the isolation felt by living with a disability. Often people with disabilities are isolated and spend lots of time in the mind. If you cannot express your grief to those around you, it encourages self-harm and harm to others. 

How do we support those with disabilities in their grief? 

• Be ready to have open, honest conversations on an appropriate level. 
• Be able to provide social stories and visual supports 
• Encourage the use of coping skills 
• Seek extra support from a therapist, if needed​

Sources:
https://www.forbes.com/sites/andrewpulrang/2020/05/26/we-know-theres-a-disability-community-because-we-mourn-our-losses/?sh=5555c70f98c4​
Brickell, C., & Munir, K. (2008). Grief and its complications in individuals with intellectual disability. Harvard review of psychiatry, 16(1), 1–12.. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3166634/​
Harper DC, Wadsworth JS. Grief in adults with mental retardation: preliminary findings. Res Dev Disabil. 1993;14:313–330. [PubMed] [Google Scholar] 
http://www.intellectualdisability.info/mental-health/articles/managing-grief-better-people-with-intellectual-disabilities​
https://www.mylepage.ca/wp-content/uploads/2019/03/Guidebook-for-People-with-IDs-.pdf​​

​Written by Emily Wachter

​Emily Wachter is the owner and entrepreneur of Photography through Autism. She is a lifelong writer and photographer with a passion for disability rights, social justice, and psychology. She is a college student at Carroll Community College with dreams of being a case manager. Emily has spoken on a number of disability panels on living with autism and experiences of bullying. She is involved with a number of disability groups in Maryland, including YoungLife Capernaum, Disability Express Group, and Special Olympics. In her free time, she likes spending time with family and friends, coloring, and shopping.