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:
- Too lazy to establish their lives between the ages of 18-26 .
- Are entitled socialists that just don't want to pay for anything.
- 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."
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!