Before the survey results come in, I wanted to write a little bit about my personal situation.
What I have found (and what I was also previously guilty of) is that most people have a limited understanding of what it means to be placed on disability.
I want to help clarify a little bit of that by sharing a little bit about my situation.
First and foremost, I would like to express that I am very lucky. I am lucky to have been employed in a place that offered its employees benefits packages and disability programs in case anyone is ever forced to access those programs. I am lucky that I was employed by the company I was with after I disclosed the information and experiences of my health complications. I was lucky to have an employer who worked with me by reducing my hours when needed, allowing me to work more sporadic hours in the day (as long as the job got done and I worked the correct amount of hours each week), and take necessary days off or afternoons off to go to medical appointments.
For several years, the only real complications were that I always required easy access to the washroom, that I will always spend more time in the washroom than most people, and that my body tended to crash every couple of months and I would need a couple of days off during those times to recover. If I could be at work, I would be at work. If I took time off or left early, it was most often because I needed to go to the hospital, to an important appointment, or (rarely) my second job if it was an emergency - which I ALWAYS made up for during the remainder of that week.
I realize that that final statement is a little controversial. Unfortunately for me, both jobs were necessary. Both jobs worked with my schedule as much as possible, but emergencies come up in every job, and although I had a 'second job', that did not diminish the level of responsibility that was expected of me.
Did I make mistakes?
Of course. I am not perfect.
At some point, my health deteriorated. And deteriorated. And deteriorated.
This meant that my appointments became more frequent, my hospital visits were more often and more serious, and my crashes happened in shorter intervals. It also meant that I spent even MORE time in the washroom at work - often answering a number of emails in the washroom while I sat there for hours. My boss was kind enough to work with me on this and reduce my hours per week after I quit my second job and still struggled, I pulled back extra-curricular activities, and my life became work and appointments, with a bit of physical activity to desperately hold on to any physical strength that I could.
Then that dreaded day came when my boss pulled me into her office and strongly suggested I apply for short-term disability. In fact, it was not merely a suggestion, but rather an expectation. I was stubborn at first, but it truly was necessary.
My health continued to deteriorate and I could not (and likely will never) improve to a point where I could return to that kind of life.
So what does it mean to be on disability?
It means that - prior to my health deteriorating beyond my control - I was able to work and make a living wage. Due to unfortunate circumstances - paired with a very lucky access to a disability program - I was placed on disability. I am now on a modest fixed income.
It was deemed - by doctors, specialists, case workers, case managers, insurance providers, disability specialists, and the federal government, etc... - that I will never again be able to work full time. It was also deemed - by these same people - that my health, my education, and my skills would not allow me to work part time ENOUGH to reach 60% of my previous yearly wage.
***I am ENCOURAGED to work, be active, and participate in various aspects of a full life. If I DO make any money (through singing or writing or anything random), I claim that money and my fixed income is then reduced by that amount.***
IF my situation were to change, if my case manager believed that I could do something and make 60% of my previous wage, I would be promptly removed off of the disability program.
As it stands now, I am not healthy enough to do anything that could possibly make me enough money for that to happen.
So even if I were to teach music, for instance, once a week, (which is currently physically impossible...) I would still continue to be on disability, and any money made from that employment would not be extra money, but that amount would be reduced from this fixed income.
When first placed on disability, a case manager would do a complete review of my file on a monthly basis. I have to prove that I am doing whatever it takes to get stronger but also have to prove that I am still not strong enough to work. My case manager has access to all of my bank accounts, my entire medical file (including appointments, consults, opinions of doctors, medications), and can monitor my social media and activities. My case manager will get regular reports from my specialists through phone calls or questionnaires, and if there appears to be any disparity, I would be notified, my case would be thoroughly reviewed again, and I may need to be assessed by other doctors outside of the ones I have.
This means that pretty much all of my doctors agree that my health complications are serious enough that none of them believe I will ever be able to work again. (This reality is a gutting feeling).
So my family doctor, hematologist, chronic pain specialist & pelvic pain specialist, optometrist, ophthalmologist, internist, gastroenterologist, psychologist, rheumatologist, dermatologist, endocrinologist, ENT, nephrologist, surgeons, chiropractors, naturopath, acupuncturist, massage therapists, etc etc etc have all been consulted and all agree that the idea of me ever being able to work is highly improbable.
So as I have been analyzing the survey results, I have noticed that (for the most part), people who have never known anyone or been on disability or medical leave themselves do not believe that one should ever go to movies or restaurants or play any kind of sport and ESPECIALLY should not go on any kinds of vacations.
Those who have been on disability, or are a little more informed on what that means, realize that life still continues.
I will go into more detail about the findings when I have all of the information.
Hopefully the information here will be a little eye-opening.