Misrepresentation of Disability & Chronic Illness in the Film Industry

 

Artist: Magritte
Artist ~ Magritte

When television shows, advertisers, or filmmakers decide to feature a disabled character or write stories of disability & chronic illness, more often than not, it’s a disappointment. Typically, a “well” actor is cast as disabled, there’s very little background research done, & the level of misrepresentation in the end is grossly inaccurate. Also, let’s not ignore those horrendous illnesses with “invisible” symptoms. I have MS & fall into this category – not all people with MS are in a wheelchair, but in society, if you can’t SEE the disability, it’s not really there. This is upsetting for so many. Another key point: if you’re actually in the “biz” & you get sick or disabled, then you’re considered an uninsurable risk & are passed over as damaged goods. We must change this – hire more disabled actors, extras, directors, filmmakers, etc. plus experts & consultants to portray a more respectable truth. This will honor & benefit those talented artists who are so deserved of paid work, medical care, and acknowledgement of the work & as a human being. Plus, let’s open the eyes & better educate the “well” society about the victories & challenges in the disabled world via film & television.

http://www.epolicyworks.org/epw/dialogues

 

Where in the World?

97d97-world-day-for-cultural-diversity

I received quite an interesting email last night. The sender was from http://www.dna.ancestry.com and the subject line read, “GREAT NEWS! Your AncestryDNA results are in!” Wow…I had completely forgotten about that little test tube experiment! Several months ago, I sealed up that pre-paid postage box, casually tossed it into the mailbox with nary a care, nor curious thought as to what my cocktail of spit might reveal. Well…on June 29th, 2016 at 8:00pm, I discovered quite a few interesting diagnostics, genetic matches, plus several mystery ingredients hidden in my family melting pot.

I had known my family was predominantly of English, German and other Eastern European descent, but not much work went into any detailed research, nor did anyone show much interest with exploring deeper into family trees. Over the last few years, I began to get curious and despite my becoming close friends with Google search, the lack of answers frustrated me a little. I turned 50 last February. The fact that I’ve lived half a century doesn’t bother me – the prospect of facing my mortality doesn’t concern me either. Basically, there’s nothing about my age or getting older that phases me in the least bit negatively – in fact, it’s quite the opposite! I embrace myself now and the years which lie ahead, but I’d like to know WHERE DID I COME FROM? As my mother and father near 80 years of age, I find myself more inquisitive about family history. I want to know everything about everything – the good, bad, and the ugly. I want to ask questions, find answers, make a record of people, places, and things of which make me who I am today.

Aha, it’s clear to me now…I remember why I decided to submit this DNA test. I’m certainly interested to know more about the history and people forgotten or lost in time. I’m not actively searching for secrets or skeletons in the closet (even though that would be a fascinating find), instead I hope to connect the dots with family on a historic…and emotional level. I think about the potential for research and scientific breakthroughs via the uncovering, and discovery of detailed information from generations past. What will we be able to find out about our genetic backgrounds, personality traits, health, and other predispositions? There’s much work to do, but maybe we’re on the cusp of something which might prove helpful by tracing various origins – let’s examine disease and congenital conditions, possible causes, and cures. Science has made fascinating strides regarding the powerful use of DNA testing in the last few decades and it will continue to evolve. Maybe it’s time to explore where we all came from. If we do this, maybe it’ll also help us understand one another – and bring us closer together as human beings. Maybe we can learn to respect the union we share of global “oneness” and gain a better perspective as to where/who we are in this world. Truly, we are all made up of small specks, microscopic bits in the universe created for a purpose…a meaning…we must not forget that.

Ethnicity estimate for Mary Pettigrew

REGIONAPPROXIMATE AMOUNT
Africa< 1%
• Trace Regions
< 1%
• Africa North< 1%
• Other Regions Tested
• Benin/Togo0%
• Ivory Coast/Ghana0%
• Africa South-Central Hunter-Gatherers0%
• Africa Southeastern Bantu0%
• Senegal0%
• Nigeria0%
• Mali0%
• Cameroon/Congo0%

America0%
• Other Regions Tested
• Native American0%

Asia0%
• Other Regions Tested
• Asia Central0%
• Asia South0%
• Asia East0%

Europe99%
• Great Britain46%
• Europe West23%
• Ireland14%
• Iberian Peninsula8%
• Trace Regions8%
• Italy/Greece3%
• Europe East2%
• Scandinavia2%
• Finland/Northwest Russia< 1%
• Other Regions Tested
• European Jewish0%

Pacific Islander0%
• Other Regions Tested
• Melanesia0%
• Polynesia0%

West Asia0%
• Other Regions Tested
• Middle East0%
• Caucasus0%

+-
Get the most out of your ethnicity estimate
Learn all about your ethnicity estimate by exploring our help content. You can find a lot more by clicking on the Learning Center button (the one with the question mark) at the top of every ethnicity page.
http://dna.ancestry.com/public/ethnicity/2773d459-4c06-429a-b334-d6d848009f9b/4

Guilty Fatigue 

Let’s discuss another aspect of fatigue which involves feelings of disappointment & GUILT!  Sigh…

Too often I find myself canceling plans.  I’m often unable to participate in, or do simple things I intend because fatigue takes over.  BOOM!  Out of nowhere it appears –  There are no excuses, this can’t be helped, yet attempts to rest & recouperate falter as the end result & mindset becomes one of GUILT!  

I’m sure I’m not alone in this emotional feeling which results from chronic illness induced fatigue.  GUILT! 

Why can’t we – why don’t we let go of this waste of emotional energy?  How can we let go of this self induced beating?  When will we let go of this cycle and realize it’s ok?  Sure, it’s a disappointment & often an inconvenient schedule change for all parties involved, but we must remember…it’s ok.  When we become “predictably unpredictable” regarding plans with friends & family, remember, it’s ok…they still love us!  We have a disease that uses & emphasizes fatigue as it’s invisible bully when we are most vulnerable.  Our reality becomes skewed as we unwillingly play the game of “self doubt” & GUILT!  

Somebody, please call forfeit!

–Mary Pettigrew      7/2016

Shells ~ 

We are the smallest
Shells not found until

Hardened over true
Hardened truthfully

As grains of sand

Engrave the soul
A secret pearl masks

Hidden tales perfect

Of what is left behind
Magnificent journey

Unique metamorphosis

Memories culled from the sea


                                                          

                                                       ~ 2013 by MPP

Sensory Overload

Sensory overload is a frustrating phenomenon which affects many people with MS.  It can take on many different forms, such as, but not limited to sights, sounds, people, movement, etc.  Other examples are listed here:

  • Environmental (e.g., crowds, shopping, dining out, acoustics, driving, etc.)
  • Social (e.g., meetings/parties, multiple or even one-on-one conversations, phone calls, dates)
  • Work, home, school (multi-tasking, chores, family, planning, studying, creating & writing letters, documents, email/texts, etc.)

Some people can recognize the signs when they are vulnerable to a sensory overload situation and they can take appropriate measures to prevent it from escalating into a bigger problem.  For others, it’s unpredictable, comes on without warning, and can even lead into full blown panic attacks.  I’ve experienced this from time to time and it’s a scary, terrible feeling.

I’ve recently had a revelation of sorts regarding the way sensory overload affects me, specifically with thought processing and cog fog.  It’s a strange, multi-faceted issue which seems to mainly involve focus, fatigue, and a little perfectionistic personality OCD.  Also, it seems my creative side of the brain battles the logical/business side, especially when I’m writing or attempting to submit anything that contains MY words or ideas to other people, or when working on any project I am passionate about.   I have trouble being able to transfer the words/thoughts inside my head directly, easily, or in a timely manner onto paper.  It’s like I’m multi-tasking in my head, therefore focus, word finding, energy, and emotional changes take over and settle in. My thoughts can’t keep up with the ongoing chatter and ever changing ideas in my head.

Basically, I am very creative person with numerous ideas of projects or things to write about filed in my head.  When an idea comes along I tend to write it down on a “to do” list.  I always start writing using a notebook and pencil and never concern myself with proofreading or editing during the “write it out” process.  I typically edit or re-write when I put my work into a computer document when there is a submission deadline I intend to keep, or when I’m simply ready to finalize something and put it away.  When I’m typing my work, my thoughts…my words into the computer, EVERYTHING CHANGES and time stands still.  As I enter my work, I edit and then edit some more.  Soon, I’m re-writing something that was just fine to begin with.  A great word or sentence will pop into my head, but the moment I start to type it in, POOF!  It’s already left my brain and so I sit, staring blankly at the computer screen as if the lost words will magically return.  My cramping fingers are hovered over the keyboard in anticipation of nothing.  Hours go by (without me realizing) and I will “wake up” to notice I’ve been stuck on the same paragraph.  I’ve had this same issue when typing out an email or test or even a post on Facebook!  I don’t recognize it when it’s coming on and I don’t realize it when it’s happening – it’s as if I’m in a trance or on autopilot, yet I’m going nowhere.

When I do come out of this bizarre tunnel vision, I feel the damage done.  I’ve hit that wall, crashed and burned, can barely speak, yet my brain will keep ruminating…and it takes a while to realize it’s time for me to rest, sleep, re-boot, and try again later – I’ve come to accept this is the way I am.

Brainfog

#MSbeautiful – An Awakening

On April 15th, 2016, I participated in the first photo shoot for a series of shoots yet to come for MS Beautiful with my best friend, Carolyn Palmer.  This unique, national campaign to spread MS awareness is in the beginning stages, but is starting to gain momentum and attention.  A calendar and roster of participants and additional photographers around the country is being compiled as we speak.  The purpose of MS Beautiful is to feature women with MS (via group and individual shots), to empower them, and showcase the natural beauty they exude…not the disease they have.  Words cannot express how wonderful my experience was.IMG_5961

The excitement and anxiety leading up to the day of the photo shoot was palpable for both me and Carolyn, but we embraced it with no preconceived expectation of what the end result would reveal.  The day of the shoot was stressful as I discovered nothing “feminine” in my closet would fit me anymore.  Over the years, my appearance and my clothes have become somewhat androgynous and more about comfort – not fashion.  I’ve lost touch of what it’s like to FEEL beautiful…or even comfortable as a woman.  Baggy t-shirts, sweatpants, ball caps, and flip flops tend to be my “go to” attire.  Rarely, do I take time to style my hair, wear makeup, jewelry, or even wear a bra.  MS, age, and stress have changed my looks and the way I physically present myself, yet I’ve come to accept some changes and ignore many of these flaws due to the passing of time and habit.

Something inside me told me everything would be ok, to take a breath, relax, and to just be ME.  So, I showered, styled my hair and put on full makeup for the first time in months.  Then I put on my black cowboy boots, jeans, a white top with a flowing black wrap, some silver jewelry, and gathered my collection of cowboy hats to take with me (I love my hats).  This was the attire I was most comfortable wearing and felt it would work, both in presentation and in functionality.  I actually felt good and started to get excited as I waited for Carolyn and Al Murin (our amazing photographer) to arrive at my house.  Once they arrived, we all piled into my car and took off for our chosen photo locale, White Rock Lake.

First, we chose to stop for a quick lunch to get acquainted and discuss ideas for the shoot.  Maybe it was the margarita Carolyn and I had with lunch, but the calm, relaxed tone was now set and we were ready.  The shoot went smoothly, nature cooperated and all was fun…from what I remember.  The events of that day are a bit blurry in my mind now, but what I remember most was the INCREDIBLE FEELING!  Waves of emotion caught me by surprise.  My breath was taken away as I perused the proofs stored in Al’s camera.  I melted into tears – happy tears and gratitude for everything which took place on that spring day at the lake.IMG_6015

Where did these feelings and emotions come from?  Well, I loved being able to do this shoot with my best friend, but it was Al who truly made the magic happen.  Effortlessly, he was able transform me, my mood, and my overall presence through the power of his expertise and camera lens.  He knew how and where to find the perfect shot without forced poses or facial expressions.   The beauty came from within and is reflected truthfully in the photos.  There is no photo-shop, no filters, or false portrayals…we were just us.  Sure, Carolyn and I stammered and stumbled a bit that day, but we were too busy having fun to notice.  There was no reminder, no thought of MS that day.  We were beautiful women, not a disease.  I am grateful and honored to be a part of this national movement and am excited to watch this special project evolve.  Let’s keep the ball rolling, spread the word, and get others involved!  I’m looking forward to seeing pictures and reading the personal stories by oIMG_6027ther women who have experienced what it means to be MS Beautiful.