Saturday, March 19, 2016

An Open Letter To Internet Commenters (Especially Trolls)

While freelance writing for a variety of different online outlets has been a wonderful opportunity to share awareness with a large community, there is a dark side that most people fail to see. Just because an authors name is on a feature doesn't mean it is their original work. Many times outlets will alter original pieces to create shorter content, or to gear language more towards their audiences; this can often generate phrases or ideals the author never intended their feature to have. Unfortunately, as a writer this is something you must deal with, the possibility that your work could be highly altered, and your ideals could now be misconceived -- or perhaps even worse. Once one outlet alters your feature, another outlet may 'pick up' that feature and alter it themselves, creating a horrible game of "telephone" that leaves your original work in shambles. When you have a strong online presence, such as a personal blog, your name on popular news outlet features, or multiple social media platforms, your personal story can become the predator of online 'theft'. While the action of an online news outlet using your information from the web is not considered an actual act of theft, it can feel very intrusive and deceitful. Many times when your information, or story, is taken by such outlets, details and facts are extorted, exaggerated, and misconstrued. Occasionally, even quotes are taken out of context portraying opposite ideas from your original concept. 
I have been victim more than once of this form of virtual story theft. Most notably a story aired by The Daily Mail a few months ago. They poorly stitched together a feature loosely based off a few of my personal blog posts, and a recent feature from XOJane I had written -- that was actually slightly altered by that outlet as well. The feature threw wild facts, and down right untrue statements about myself, and my illness, while seriously altering my "ideals" from the original works. Unfortunately when you chose to be a public figure, your information posted online to a general audience is fair game to these outlets; while it is highly unfortunate and deceptive, there is nothing that can be done. 

Screenshot Via Facebook

Sometimes, even when a feature is created through a direct interview with a news source, facts and statements can be misrepresented. Recently I was interviewed by a very compassionate individual from The Guardian US on a feature regarding the US Health Care system and what happens to the ill young adults who upon turning 26, lose their parents health benefits. This piece was supposed to been an opportunity to shed light on a critically important topic, but unfortunately; the feature was a bit disorganized, in turn creating mass hysteria in a comment section full of filth and hate. While this feature should have been written with facts regarding young individuals inability to establish a solid work position resulting in useful benefits due to their illnesses, it instead focused on young adults who, to the reader, seemed to, "just want a ride from mom and dad." While I am sure this was not the authors intent, there were quite a few fragmented quotes, missing critical details about the patient's circumstances, and no reoccurring theme to wrap a solid conclusion from the piece. Unfortunately this lead to vast misinterpretation that millennials are: 

  1. Too lazy to establish their lives between the ages of 18-26 .
  2. Are entitled socialists that just don't want to pay for anything.
  3. Are total idiots. 

Comments on his featured ranged from: 
  • "Man I wish my parents has health coverage I could be on. Poor 26 year olds who had 8 F*****g years to establish, find a job, and live of mom and dad. How will they manage." 
  • "Get a job with your own benefits... Pretty simple." 
  • "Alexander the great conquered the world by 25. You think these people could get a job by 26.   A pampered worthless generation ..."  
  • "If your not employed by 26 you should be in jail, unemployed, or certifiably insane..." 
  • "We don't want to pay for your health issues." 
Need I continue?

What this featured failed to mention is that patients who are extremely ill didn't get ages 18-26 to establish their lives, attend college, and find a career that would provide benefits. We spent those years in hospital beds, surgery rooms, and receiving treatment. In my opinion, what this feature also should have included is the lack of disability inclusion in the work place. Even if a patient like myself was able to work, who would hire a woman on a feeding tube, requiring supplemental oxygen, that cant stand for more than ten minutes, or lift anything over 5 pounds. Also, don't forget this employer would have to approve 15+ days off a month for doctors appointments, and at least one full week in a row off a month for chemotherapy. 
Recently, a study conducted by Microsoft found that disabled individuals with masters degrees were employed only at 47% while able bodied adults with masters degrees were employed at 87%. The study also showed that many individuals hide their disabilities from employers to gain fair opportunity -- what about us that cant hide our disability? Do you honestly believe we would be hired?

So to the downright vile comments expressing those of us receiving health insurance from our parents until the age of 26 are lazy, entitled, dumb, or my personal favorite, "you're only in your 20's, life hasn't even begun to suck yet! Buck up a** holes." I have news for you. Being terminally ill and disabled was NOT a choice. Believe it or not I worked from the day I turned 16 to age 22 -- yep you read that right I worked while being terminally ill, simply because I loved working. As a teacher with an early education degree I had the opportunity to receive health benefits, but they WEREN'T GOOD ENOUGH, so my parents offered to extend theirs to me. Thank goodness I have parents that love and support me. At 22 I became so critically ill I laid unconscious in a Neurological Step-Down ICU for almost 30 days. My doctors finally told me I had to resign from teaching, and start relying on state disability, or I would die withing months.
In two years I will have the option to receive Medicare through my State Disability Program, HOWEVER; with the small income I receive from the state, and vast treatment, physician, and equipment needs it will not be financially possible to stay up to date with my health. Medicare is a treatment plan not made for seriously ill individuals. These plans just don't cover enough, meaning, patients typically have to purchase another supplemental state plan, as well as a prescription drug plan. Even with these extra purchased plans patients are still shoveling out money for treatments and prescriptions. Many seriously digress after turning 26 because they can no longer afford their prescriptions, copays, and treatments -- as all their income is now going towards the cost of Medicare, and their necessary supplemental plans. Patients have stated that nearly 70-80% of their state income goes back to the state for these necessary plans, leaving just 20% of their income left to pay their copays, prescriptions, non-covered treatments and equipment -- and then their is the basic life costs such as rent, gas, and bills not factored into that 20%. 
Even with all that 'coverage' patients are still turned away from prescribed treatments, or specific hospitals due to state insurance having such huge limitations, unlike private insurances provided by a workplace which can be much more tailored to individual needs. Now, imagine if the Affordable Care Act gets repealed with the next presidency and patients like myself cannot purchase the necessary supplemental plans on top of Medicare due to a pre-existing condition? Where will these "useless 26 year old millennials" be then? 

While I got a bit off topic, you can see why freelance writing is a blessing and a curse. The internet is a hostile place where information is distorted and the general commenter is a vile heathen that gets highs off others misfortune. I will never give up my platform for awareness, so in turn have had to learn to let imbecile comments like this, made by individuals that obviously have no regard for a fellow human, slide off my back -- I actually get a pretty good laugh out of some!

So please REMEMBER, when you read a feature, just because someones name is on it, doesn't mean it is their words, their opinions, or their facts! 

6 comments:

  1. I've been on Medicare since the exchanges rolled out. It's hard even for the non terminally ill. I can see how much worse it can be for someone with a terminal illness that requires constant and consistent management.

    I don't think many people really understand how difficult it is for people unless they have been in the position. I have to get approval for the ER unless emergency services takes me in, even if I know very well what is going on and that I know I have to go to the ER to be treated. I can't get treatments that my doctor wants me to have because it's considered preventative and it covers very little prevention past what the ACA requires. Very few doctors take it, usually only community health clinics or public health. Most hospitals will try to transfer you out as soon as they stabilize you enough to be transferred.
    People who want to complain about people who are disabled, terminally ill, poor... they don't really understand how hard it is to be any of those things. Keep writing, and keep fighting. If at least one person learns something, it's worth it.

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  2. Don't listen to people who OBVIOUSLY DIDNT READ THE ARTICLE ! Jerks gonna jerk.

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  3. Feeling so grateful to the nhs while reading this

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  4. I'm in the same boat and it sucks! So... Amen and Amen!

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  5. Thank you for writing this, it so needed to be said.
    I am thankful every day for the affordable care act that lets us keep coverage with these conditions and on our parents insurance until 26. I am terrified of 26.

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  6. My husband and I are both disabled and nearly 40 years old. We did not plan to stop our careers by now, but complications from our medical conditions have forced us to have to leave our workplaces after only about 15 years after graduation from graduate school. We each hope to be able to go back part time at some point but have found it extremely difficult to find an employer willing to accommodate our needs in the workplace. We've both had such horrific employment experiences that we have developed a great amount of anxiety that overpowers is when we even think about trying to work again. My husband is working with a local organization that helps people with disabilities find a job and once they're hired the organization helps the client by meeting with the employer and talking about the needs of the client and how they can help the employer make the necessary accommodations for them. Of course the employer is already supposed to do that under ADA guidelines, but it doesn't usually go very smoothly for the worker so this program helps take the stress off the worker who already has so much on their plate - it's like having a mediator or something similar. We've been very happy with the program, we just wish we didn't need it! ADA laws should be enforced more frequently (not just after the person has lost their job) and employers should be given government incentives for hiring folk like us, and I'm not talking about in just certain types of jobs, I'm talking about giving employees incentives no matter if it's a job you need a PhD for or a HS Diploma, it doesn't matter. Just because a person has medical conditions which effect their job performance doesn't mean they aren't intelligent, or that they don't have the right to choose their career path, no matter what that might be. Thank you for sharing your story with the world, it takes great courage to put yourself out there, people can be mean, but the good outweighs the bad, because you are bringing people hope, because finally they have found someone who knows what they are going through. Thank you!

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