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I Want Us to Change the Way We FaceDementia 

5/4/2014

4 Comments

 
A new Facebook app called FaceDementia aims to give people "a glimpse into dementia" by attempting to replicate the symptoms of dementia - such as memory loss, confusion, and communication difficulties - using Facebook.
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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. 
During the latter half of the interactive presentation, you can "pause and watch what someone affected by dementia has to say."  The video then displays a woman named Susie Hewer.  

We learn, from a text box over the video, that Susie's mother Peggy has dementia. (The video is displayed on this page or you can view it here.) 
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.
4 Comments
Cathy Carson
5/5/2014 05:46:56 am

I really like your perspective on this issue, Hailee, you’ve made me think more about the relationship between raising awareness/support and society’s perception of “victims.” I caught a glimpse into dementia with my beloved grandmother -- constantly reminding myself to be patient but without being patronizing or treating her as "less than." The elderly are already seen as diminished in our youth-oriented culture, and we tend to see physical and neurological challenges as further evidence of their decreasing validity.

I like the idea of using social media to raise awareness, but you’ve made an important point: the effort must include voices of individuals with dementia so that society sees their humanity rather than focusing only on their invalidity.

I recently read “The Reason I Jump,” the startling insights authored by a Japanese boy with autism; it changed my perspective on those with autism from “victim” to differently-abled people (without diminishing the impact of autism). A book from the perspective of his parents would have aroused my sympathy, but I would have identified with the caregivers, not with the boy himself. Instead I see the humanity we share, which in turn helps me better understand his challenges. The experience was more authentic somehow, and I think your blog post explains why. Combining this primary perspective with the impact on caregivers, family, friends, coworkers, etc. would only help the cause.
I think you should send a copy of your blog to the Alzheimer’s Research UK!

Reply
Hailee Gibbons link
5/19/2014 11:41:49 am

Cathy,

Thank you so much for reading my blog and sharing your thoughts! I have yet to read "The Reason I Jump" but it sounds like it was a powerful memoir to you and I appreciate your perspective on how your thinking might have changed (or not changed) had you read the same book from the perspective of parents or caregivers. I think seeing the humanity we all share is key in any struggle for rights, justice, and equality.

It had not occurred to me to send my blog to Alzheimer's Research UK but that is a good idea! I am curious to see if and how they would respond.

Hailee

Reply
Lisa Mahaffey
7/21/2014 03:05:41 pm

Well said Hailee. It saddens me when people look at the person with dementia as someone to be pitied. When families understand the process they can connect and share rich lives with that person up to the very end. People do not have to be oriented to be happy.

Reply
Hailee Gibbons
7/22/2014 06:28:01 am

Lisa,

Thanks for reading my blog and sharing your reactions! I agree that it is unfortunate so many people view those with dementia as objects of pity. I also agree that people do not have to be "oriented" to be happy, particularly if we consider the idea of alternate or multiple realities, something I wrote about recently. Perhaps I will share that work on here in the coming months!

Hailee

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    PhD Student in Disability Studies at UIC, Rhetorical Warrior Princess

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