Disability Pride Podcast: The Complexities of Identity, Diagnosis, and Disclosure in the Context of Psychiatric Disability
I was recently a guest on Winston Lindqwister's podcast on Disability Studies/Mad Studies for Disability Pride Week at Duke University. We discussed psychiatric disability, the complexities of diagnosis, stigma, identity, community, why my experiences with psychiatric disability have led me to identify with and relate to people with dementia, and so much more! You can listen to the podcast below. Check out the other episodes too, which feature a variety of mad scholars and activists!
The app uses information from your Facebook profile to create a individualized presentation to give people "insight into what hundreds of thousands of people with dementia experience each day." As somber music plays in the background, the app displays your friends, family members, partners, home, school/work, posts, and photos. As the presentation progresses, it reads:
But what if some of these memories start to become confused or lost? You might begin to mix up what you said. Or forget you'd ever said them. You might forget where you live, work, or go to school. Or forget how to do day-to-day things. You might forget things in your past that are important to you. Your husband, wife, partner, friends, or children may become strangers. These are some of the symptoms for the hundreds of thousands of people in the UK living with dementia. Dementia isn't a normal part of ageing. Dementia is caused by diseases. We've beaten diseases in the past. And with your help we can do it again. Research is the answer. Alzheimer's Research UK are the experts.
The app was created by Alzheimer's Research UK, with the primary goal of increasing research funding. Rebecca Wood, the Chief Executive of Alzheimer's Research UK, explains:
Alzheimer's disease and other dementias pose one of the greatest threats to public health now and in the future. Research is the only answer but funding still lags far behind other serious diseases. We hope FaceDementia highlights why it's so important to invest money into research so our scientists can tackle the devastating diseases that cause dementia.
Overall, I find this app and the purpose behind it problematic. I want to be clear - I am not entirely against funding medical research on dementia. While I question if a cure is even possible, I believe it is a complex issue and understand the perspectives of those who wish and hope for a cure. However, I do have an issue with this app furthering negative discourses about dementia while presenting medical research as the only priority.
The app only briefly pays attention to the "hundreds of thousands of people" living with dementia in the UK right now, but, in my opinion, these are the very people about whom we need to be thinking. Research that works to prevent or cure dementia does little to change the stigma, prejudice, and discrimination that people who currently have dementia face daily. It also does not help us improve our current care practices for people with dementia or explore ways to adapt the environment to fit the unique needs of people with dementia.
This app encourages us to face dementia as we would face an opponent. It urges us to donate money to fight dementia. In other words, this app asks us to financially support the medical industrial complex and appeals to our emotions by militarizing the act - we need to "beat" and "end" dementia. Whitehouse (2008) has drawn attention to how highly militarized the discourse on dementia is - the quest for a cure is likened to "waging a war" on a disease that "robs and ravages" the minds of its older "victims". These militarized perspectives result in a focus on the disease and not the person - ultimately contributing to the dehumanization of people with dementia.
Although it may be unintentional, the app actually furthers this dehumanization by not sharing the perspective of a person with dementia. When we "watch what someone affected by dementia has to say," we are hearing the perspective of a caregiver. This is not to say that Susie's perspective as a caregiver is not valid and important - but why do we not also hear from Peggy, or another person with dementia? Their voices, experiences, and thoughts should also be present.
I want us to face dementia by dealing it with it - and perhaps even being radical enough to accept it as a part of the human condition, like many other disabilities. As Kafer (2013) points out, we can create space to recognize, discuss, and even mourn impairments while still advocating for rights and justice. A Disability Studies lens is important in analyzing this app and similar media because it can lead us to reject the belief that people with dementia are simply victims of tragedy by demonstrating how environmental and attitudinal barriers disable people with dementia. This may result in refocusing our efforts. In other words, perhaps in addition to spending time and money on medical research, we can reimagine the ways people with dementia can retain a sense of selfhood and experience satisfaction and happiness in their lives.