Dying as Someone With a Developmental Disability

One big issue with the end-of-life industry is the lack of interest in it on a grand scale. People, organizations, funders, and governing bodies do not seem interested in the sector, and by proxy are not interested in furthering research or funding. While this lack of interest affects everyone, as everyone will die at some point, it will also disproportionally affect the groups who are already disenfranchised. One of those disenfranchised populations that we aim to focus on is the developmentally disabled community, and in particular, my research focuses on the population with ASD (autism spectrum disorder).  

Photo from Wix.

As things currently stand, there is very little research on how developmentally disabled people, both those with ASD and with ID (Intellectual disability), experience and understand the end of their life, dying, and grief. Most of the research focuses on cold and impersonal statistics, talking about neurodivergent people as just a population and statistics. There are multiple studies on death rates, causes, and ages of death in neurodivergent populations, but no real qualitative research on how these people feel and what they perceive as issues within their community.  

This kind of research approach feels very dehumanizing and, in many cases, also infantilizing, as most of the research is focused on children to young adults, as if there are no adults or older adults with a developmental disability, let alone it being worthwhile to study. This then reinforces the perception of a developmental disability equating childishness and incompetence, which is very harmful to the community. No matter the cognitive ability or care needs of the individual, an adult is still an adult and should be respected as one.  

One effect of child-centred research can be seen in the example of a caregiver who is trying to research how to support their elderly loved one with Autism process their new terminal diagnoses, they will only find resources to help children and teens. Being the only resources available, the caregiver may feel they have to use those tactics made for children, which can be unsuitable for their loved one, and make them feel infantilized. This lack of thorough research forces caregivers and community members to resort to trial and error, using unsuitable tactics and becoming more stressed out than when they started. 

Because of this lack of thoughtful, qualitative research into how developmentally disabled people experience end-of-life, there is also almost no research in the field published by people who identify as a part of the community. This is an issue because it is not a capacity issue on the part of developmentally disabled and neurodivergent folks, as there is a plethora of community members working in many sectors of academia; it must be an external barrier. 

This is a very upsetting issue for me, and hopefully for anyone who hears about it and cares for their fellow humans. It very often feels like disabled communities are forgotten by society and left to suffer with barely any support. Unfortunately, if you look at the supports currently out there for the developmentally disabled population, and the severely lacking research basis, it seems as if we are forgotten by society and academia in general. This is not only heartbreaking, but also enraging. The developmentally disabled community deserves not only the same respect and resources as any other community, but they deserve even more help so they can be lifted from the disadvantaged position that they have been put in by our current society. 

This urge to fight for the community is precisely why we are doing the work we are doing, as it is up to nonprofits and grassroots organizations to conduct the necessary research and provide the information we need to know. That is why we need to build our team and our capacity to find out what the developmentally disabled community needs to make end-of-life easier, what they feel about grief and mortality, and how we can use that research to help people going forward. We can build the means and the tools to help communities, so that is what we will do. And we wouldn't be able to do this work without the generous financial contribution from the Pacific Blue Cross Health Foundation. With this grant, we have been able to strengthen our link with the Nanaimo Association for Community Living, working with them to develop specific resources for the developmentally disabled community, as well as customizing Death Doula training for care workers. Thank you so much, Pacific Blue Cross Health Foundation, for your compassion, support, and investment in the developmental disability community.  

There is still time to walk in George's memory this October, join Team Butterfly here: https://www.zeffy.com/en-CA/team/team-butterfly

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Emit Bryne’s academic and professional work is deeply rooted in supporting 2SLGBTQI+ and Disabled communities. As the Project Lead, their ability to synthesize research and offer thoughtful analysis has been invaluable to No Place Like Home, ensuring the project is built with care, intersectionality, and a strong community focus. With a BA in Japanese Studies from Huron University College at Western, Emit’s academic research has explored gender and LGBTQ+ representation in media, including a paper on self-representation of LGBTQ+ identities in Japanese manga, originally selected for presentation at Western University’s 'Flaunting It!' Conference on Gender and Sexuality. With an additional Social Service Worker diploma at Humber Polytechnic, Emit is committed to developing inclusive, affirming support systems for marginalized communities. Within their work with Home Hospice Association, they have played a key role in researching issues facing 2SLGBTQI+ elders, developing surveys, customizing workshops, and shaping the foundation of No Place Like Home to ensure that queer and trans folks at any age or stage can receive respectful and compassionate care at the end of life.