When I was a little girl I had always dreamed about being famous. I was a singer, dancer and actress who wanted nothing more than to be in the spotlight. Who knew I'd actually get my chance! Well...sort of. I was thrown into that spotlight unexpectedly and for reasons that I would have never imagined.
I didn't become known for my innate ability to entertain crowds from the stage. I got my debut for breaking my neck. As we are all well aware of, people will judge you. Some people will like you and some people just won't. But this judgement is magnified when you are introduced to the media.
Six months after my injury, the Today Show approached me for my first big interview. I'd be live in front of millions of people. I felt like sharing my story would help me heal further. I'd already been doing pretty darn well I think, but it gave me a stage to give this unfortunate accident a purpose. I smiled, told the world my story and that was that. Or so I thought. Over the next two years there would be stories about modifications to my home, my wedding, a short stay I had at Project Walk and most recently a popular discussion thread on reddit.com where I allowed anyone to ask me anything.
When you put yourself out there like I have, you'd be silly not to expect a few negative comments. Don't get me wrong. I received overwhelmingly positive feedback. People seemed inspired, supportive and so happy for my fiancé Chris and I. But honestly, I think I was a little naive as to how ignorant some people could really be.
I laughed most of it off but there were a few things people said that really upset me. People even commented on various articles suggesting that my friends and I must have been belligerently drunk and so I deserved it. Well no one deserves anything like this but lets go ahead and clear the air. We weren't.
I don't care what people say about how I look or even their opinion on my relationship. But the moment you judge my character is where we have a problem.
I didn't seek out the media for financial gain. If you know how the media works, they reach out to people for stories--not the other way around. It's not like I called up the Today Show requesting an interview.
But I always took advantage of new media opportunities for many reasons. One of them being to show the world that people with disabilities weren't all sad, depressed, unmotivated people sitting at home doing nothing. . I didn't share my financial woes related to insurance so that I could get sympathy. I was attempting to shed some light on a healthcare issue that is greater than me. The messages I attempted to portray didn't always come off the way I intended.
The thing is, people don't seem to realize a few things. Every now and then, a writer will get their facts messed up. But even if an article were written flawlessly, there are always going to be some unanswered questions. Unfortunately, some people like to fill in these blanks with their own facts and judgements.
One of the worst comments I ever read was that I was a "parasite."Are you kidding me!? You read this story of love, loyalty and overcoming adversity and that's what you come up with? This comment stemmed from an article which stated that my fiancé and I were putting our wedding on hold because I might not qualify for health benefits if we did tie the knot.
After some research, it turned out I didn't quality for SSDI or Medicaid even as a single woman. I was just out of college with not enough work experience to qualify for SSDI and the deductible to receive medicaid would have been much higher than my insurance premium of $625 a month. But people were writing comments all over the Internet that I was attempting to abuse the system by putting the wedding on hold. It's like people assumed that being disqualified from benefits meant that we were perfectly financially capable of going on with our lives without it. Because, surely I must be getting rich engaged to a middle school teacher and having a disability.
What they don't know is that insurance doesn't cover a caregiver which forced my mother to leave her job and my Dad to help me. What they don't know is that medical equipment is outrageously expensive and that it can cost thousands of dollars just to go to the bathroom per year.
I was called "lazy" just six months after breaking my neck for not getting back to work. First of all, when you are that early into your injury, you still have so much to figure out in life. At that point I hadn't even received a wheelchair that was fit for me. People would see me on tv doing an interview and assume that I should be good to go. But just because I can do interviews and play sports with assistance as needed, does not mean that I can go off on my own for a job.
Physically getting to a job , pushing across a parking lot, taking my medication and going to the bathroom were all things that I was by no means prepared to do on my own. I've got most of those down by now but there are other factors that keep me from obtaining and being able to physically do a job. I suffer from pain that's so bad in the mornings that I wake up with a clenched face unable to move a muscle, sometimes crying. Then there's the low blood pressure. There are many days, even with the medication, that I have a difficult time sitting up without passing out. Lets just say I'm not the most reliable employee. You can't look at somebody and know what they are capable of. Heck I don't even assume what other c6 quadriplegics are capable of because every injury is different.
In a country where bullying seems like a hot topic that we have decided to take a stand against, It is sad to see that some adults had come after me with their words the way that they did. Lucky for me, I know they aren't true. The main reason many of these comments made me so defensive is that I'm not the first person with a disability to be referred to as someone who is working the system, lazy or a parasite. Does it happen? Well sure it does. There are plenty of "lazy" able-bodied people, too. But people who lump everyone requiring government assistance into a group of entitled moochers are not only wrong but ignorant. I do believe in karma but let's hope for their sake they won't find out the hard way just how hard it can be.