{"id":799,"date":"2016-09-12T15:15:19","date_gmt":"2016-09-12T05:15:19","guid":{"rendered":"http:\/\/theageofsenescence.com\/?p=799"},"modified":"2025-02-20T21:27:32","modified_gmt":"2025-02-20T10:27:32","slug":"gene-wilder-stigma-a-childs-smile","status":"publish","type":"post","link":"https:\/\/umbrelladementiacafes.com.au\/?p=799","title":{"rendered":"Gene Wilder, Stigma and A Child\u2019s Smile"},"content":{"rendered":"

Kirsty Porter
\n12 September\u00a02016<\/strong><\/h4>\n

Since writing this article in 2016, Kirsty has gone on to build and develop a charity supporting five dementia caf\u00e9s in Victoria, Australia.<\/em><\/p>\n


\n<\/em>____________________<\/p>\n

It\u2019s been more than two weeks now since Gene Wilder died, and I\u2019m still struggling with it. We may never know the full reason why Mr. Wilder and his loving family respectfully wanted to keep his Alzheimer\u2019s disease a secret, but I just can\u2019t shake the thought that stigma might have played a starring role here.<\/p>\n

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\u201cWe understand for all the emotional and physical challenges this situation presented we have been among the lucky ones\u2014this illness-pirate, unlike in so many cases,\u00a0never stole his ability to recognize those that were closest to him, nor took command of his\u00a0central-gentle-life affirming core personality.\u00a0The decision to wait until this time to disclose his condition wasn\u2019t vanity, but more so that the countless young children that would smile or call out to him \u2018there\u2019s Willy Wonka,\u2019 would not\u00a0have to be then exposed to an adult referencing illness or trouble and causing delight to travel to worry, disappointment or confusion. He simply couldn\u2019t bear the idea of one less smile in the world.\u201d<\/p>\n<\/blockquote>\n

Reading this, I looked straight to Instagram and Facebook, sourced a beautiful photo, researched an apt quote from Mr. Wilder and went about listing all the #\u2019s to promote my product. But alas, nothing was published from me.<\/p>\n

Mr. Wilder, nor his family, wanted him to be remembered for having Alzheimer\u2019s disease that might have caused “one less smile in the world”.<\/p>\n

Yet, Mr. Wilders own public \u2018coming out\u2019 for having Alzheimer\u2019s was laden with feelings of fear that might upset a fan base, a child fan base no less.<\/p>\n

The last sentence in their statement really saddened me and I\u2019d like to express why hiding Alzheimer\u2019s might be detrimental to the child and thus future generations.<\/p>\n

\"fear
Source Pixabay<\/figcaption><\/figure>\n

The Stigma<\/strong><\/h2>\n

With the greatest respect, Mr. Wilder\u2019s decision to keep his diagnosis a secret is consistent with global cultural attitudes when learning this \u201cillness \u2013 pirate\u201d disease has taken a loved one. And sadly over time, and over multiple generations, negative attitudes have ultimately settled in creating complex and discriminating prejudice<\/a> that influence individuals to hide, or worse still, remove themselves from the judgment of society. \u00a0And regrettably, this is stigma personified.<\/p>\n

The thought that Alzheimer\u2019s should be kept a secret to shield us from smiling is a frightening perspective. \u00a0Especially when it is expected that dementia (symptoms of Alzheimer\u2019s) will directly or in-directly impact us all by 2050<\/a>. \u00a0If the message is to keep a dignified silence about a worrisome, troubling or confusing disease, perhaps we can expect isolation to become a natural response. \u00a0A heartbreaking thought indeed.<\/p>\n

The Child And Child Inside<\/strong><\/h2>\n

No one should have to deal with Alzheimer\u2019s alone, no one. Children, included. \u00a0Of course they see the dementia symptoms, but in a way only children do<\/a>\u00a0(Werner, 2010). \u00a0So we absolutely need to be hands on to guide them appropriately or they will invariably struggle to understand it, look away from it or act out and thus the stigma lives on.<\/p>\n

You see, cool new stuff in the ageing world only comes about from inspiration and the ability to turn tough problems into opportunities. So if we hide or isolate the problem, we simply wont find the innovation. And who better to innovate than a child, or the child within us? Isn\u2019t that what Willy Wonka was all about? Inspiring the child and the child inside?<\/p>\n

\"inspiring<\/p>\n

From an awareness perspective, we need to really harness the energy, enthusiasm and the sheer power of young people to dream big, because reversing stigma<\/a> is a hell of a lot harder than inspiring the innovator.<\/p>\n

With nearly my entire nursing career in the aged care sector and caring for countless families dealing with (and dying from) end-stage dementia, I know inspiring change and innovation in this sector is extraordinarily hard and fraught with stigma, ignorance and fear. This has to change, and it has to include the big dreamers \u2013 our kids, the next generation.<\/p>\n

After two weeks of analysing a media who have dutifully and collectively respected the wishes of Mr Wilder to \u2018hide the ugly\u2019, I\u2019ve become determined to get on with what I mean to do, and make sure it comes out loud and clear.<\/p>\n

So in big shoutty text: PEOPLE IN THE THROWS OF DEALING WITH DEMENTIA: DO NOT TAKE YOURSELF AWAY FROM YOUR FRIENDS OR YOUR COMMUNITY AND CEMENT THE IGNORANCE OF DEMENTIA.<\/p>\n

You may not be able to change your diagnosis of dementia, but my goodness you can affect the journey. Make it a good one. \u00a0Having a\u00a0dementia doesn\u2019t mean you should hide from the world.<\/p>\n

\"life<\/p>\n

Find The Smile<\/strong><\/h2>\n

To the Person living with a dementia disease:<\/strong>\u00a0you are very much alive and showing how valuable you are by doing the things that make you happy and laugh out loud. Designing a life after your diagnosis is a choice, and how you choose to live your life with dementia is extraordinarily important to the smile of a child and all \u2018inner\u2019 children alike.<\/p>\n

To the caregiver:<\/strong> you are the ultimate hero in this dementia journey and you should not go through this alone. There are people organized in the health system designed just to help you. Exhausted as they might be, you cannot and should not go un-noticed. Please look to your community to help. This is not a journey you should travel alone; trust me when I say that your own mental and physical health will suffer otherwise. I urge you to check out a new website called\u00a0Dementia Challengers<\/a> or on Facebook @dementia.challengers<\/a>\u00a0to read about how other\u00a0caregivers are supporting each other.<\/p>\n

To the community businessperson:<\/strong> I guarantee to you, when you witness the glory of a person living a full life with dementia, you will be inspired to create a dementia friendly business. Not just because you are poised for continuous improvement but also because your customer base will be reflective of our societal ageing population; making you a dynamic and attractive business indeed.<\/p>\n

To the inspired health professional:<\/strong> I guarantee you will lovingly laugh out loud and fist punch the air when you see someone with end stage dementia completely come alive as they belt out a tune from a bygone era, or paint a magnificent piece of artwork to express how they feel. \u00a0And I guarantee you, you will smile – and smile big, when you witness someone so afflicted with dementia that they can no longer talk, yet they lovingly cradle a baby or nurture a young child.<\/p>\n

The thought that we should isolate ourselves or our loved ones when they reach a certain age or condition only fuels me to push further into the business of awareness and promotion.<\/p>\n

So in the interest of change, channeling big dreams and \u2018choose your own adventure\u2019; I\u2019m climbing into my own glass elevator and preparing to burst through the roof and into the world of dementia to see where it takes me.<\/p>\n

I\u2019m joining a global community hell bent on decreasing the stigma attached to dementia and even wider still, the stigma attached to being old.<\/p>\n

With the help of my glorious community, I have decided to join the global ranks of dementia awareness and promotion by implementing a tried and tested strategy to de-stigmatise and de-isolate people with dementia.<\/p>\n

We are doing this by building our very own dementia friendly caf\u00e9 environment<\/a>, starting right here in Blackburn in Melbourne, Australia (click here for more information<\/a>). Further, we going to share with you a running commentary of our journey, trials and tribulations through, the very fashionable and oh sooo Next Gen\u2019, blogging and several social media channels! \u00a0 And we’ve fondly called it The Umbrella Dementia Cafe. \u00a0What do you think of the name? Will it stick? Check it our here<\/a> or on Facebook<\/a>.<\/p>\n

\"The<\/p>\n

So if are experiencing dementia, please come and build\u00a0a community\u00a0with us!<\/p>\n

Fear is out and curiosity is in.<\/p>\n

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\u201cThe suspense is terrible, I hope it lasts!\u201d
\n– Willy Wonka \u00a0–<\/p>\n<\/blockquote>\n

Written By Kirsty Porter<\/strong><\/a><\/p>\n

Since writing this article Kirsty Porter has built and developed a charity that supports four community run dementia cafes. \u00a0 She is supported by a massive cohort of people determined to make a positive impact in the lives of people living with dementia in their community.\u00a0<\/strong><\/p>\n

See the website www.umbrelladementiacafes.com.au<\/a> and Facebook for all the photos of the cafe.<\/p>\n

<\/h2>\n

Literature\u00a0resource for the caregiver:<\/strong><\/h2>\n

‘The Artistry of Caregiving: Letters to Inspire Your Caregiver Journey<\/a>\u2019 By Carole Brecht (Author & Artist see Instagram @sangenwoman<\/a>)<\/strong><\/p>\n

A deeply personal account of her caregiving experiences for her mother. \u00a0Click here<\/a> for my review of her book.<\/p>\n

<\/h2>\n

Literature\u00a0resources for children<\/u><\/strong><\/h2>\n

I\u2019ve researched and found some excellent books helping children understand dementia and Alzheimers;<\/p>\n

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  1. \u2018Weeds in Nans\u2019s Garden.\u2019 \u00a0<\/strong><\/em>By <\/strong>Kathryn Harrison<\/a>\u00a0(<\/strong>recommended<\/strong>)<\/strong><\/li>\n
  2. \u2018What happened to Grandpa.\u2019<\/a> \u00a0<\/strong><\/em>By Maria Shiver (inspirational change agent)<\/strong><\/li>\n
  3. \u2018Still my Grandma.\u2019 <\/a>\u00a0<\/i>By Veronique Van Den Abeele & Claude K. Dubois (award winning book)<\/b><\/li>\n
  4. \u2018Wilfred Gordon McDonald Partridge.\u2019 <\/a>\u00a0<\/em>By Mem Fox \u00a0(an oldie but a goodie – I have this one for my own children)<\/strong><\/li>\n
  5. “Why Did Grandma Put her Underwear in the\u00a0Refrigerator\u201d<\/a>\u00a0by Max Wallack and Carolyn Given. (Written from a 7 year old’s\u00a0perspective)<\/strong><\/li>\n<\/ol>\n

    Finally, Dementia Resources (click here<\/a>)<\/strong>\u00a0have also complied a great reading list for children aged\u00a01 to 15+ years helping to they understand dementia better.<\/p>\n

    This short 2 minute cartoon video is also a great educational piece about knowing the difference between dementia and Alzheimer’s<\/h4>\n