Thursday, 1 October 2015

Disabled and Rejected from Disability

Throughout my diagnosis I have learned that there are stigmas surrounding those who are sick and disabled. These assumptions are mostly made by "healthy" people who have never ever been in this sort of situation. These judgements range from a mail carrier who questioned my mother and I for using a parking space designated for people with disabilities, to me being rejected from receiving disability from the provincial government. I've learned the hard way that people don't expect someone who is disabled, or sick, to wear the lipstick shade 'Hot Gossip' by Mac, or have a cat eye so strong it could steal your man. I think people want me to wear sweat pants- and not the cute sweat pants unviersity girls wear for yoga. The baggy ones that your dad wears from Costco.

Another thing that I have learned is that in order to apply for disability (despite having an often fatal disease that has left me disabled) is that you cannot have savings in your bank account.

Me in my pajamas in bed.
This is what people expect being sick/disabled to look like.
How I actually dress when I leave the house.
(On a good day of course. Did I mention I like Lana Dey Rey?)

About 3 months ago I had to resign from my job. I had returned 6 months after diagnosis (which in hindsight, was way too soon.) I returned to work for an almost a year, but found that I was physically no longer able to work. Unfortunately, my job was increasing my symptoms. It felt like I had the flu all of the time because of the extreme facial flushing I would develop from the stress. I would also have the chills and aches throughout my body. I felt like garbage all of the time. I felt too tired to do anything, too tired to enjoy life. I felt like I was living to work, and when you become aware of your own mortality- that is a very unpleasant feeling. I knew that this day would come, so I had saved my earnings. I resigned, or retired, whatever you want to call it. Since leaving my job I have more energy, I feel better, I have less symptoms. I am able to do more, and do more things to take care of myself.  It is clear that the stress and physical demands of my job were taking a toll on me.

Because I am no longer working, I tried to apply for assistance through government funding programs (ODSP or the Ontario Disability Support Program.) I learned that I was not a candidate because I had saved up too much money. Frustrated, I told the woman on the phone that I was essentially being punished for becoming sick and saving my money to prepare for my future. It was infuriating. I was informed that I could call back once I used most of my savings, and had less than a certain amount in my bank account. She told me to call back once I had less than 5 grand in my savings, which would pretty much leave me in poverty. (As a side note, the average cost of a funeral in Ontario is a little over 4 grand.) I was also asked if I had any assets, because I would more than likely be required to sell them before being considered for ODSP.

If I did not live with my parents and have their support, I would have to rely on the ODSP. I would not be able to afford rent, pay for food, and my medication. The allowance received monthly is barely enough to cover rent in the area. A study in 2014 showed how more people who are disabled are living in poverty and are using a food bank. Does this sound like good social program to you? Because it doesn't sound like it to me. Why are we putting sick and disabled people in a worse situation instead of helping them? The system is set up so people who need disability can never get out of a financial hardship, or must put themselves in a financial hardship in order to apply- despite being unable to work due to a disability.

I completed university, and was planning on a bright future. I have worked for 12 years of my life, which may not sound like a lot, but I am only 27 years old. That is nearly half my life. I obtained a job where I was making good money and receiving benefits. I would have stayed and worked full-time if I could have, but clearly I couldn't. I saved my money because I don't really know what will happen in the future. What if medication becomes more expensive? What if I need treatment outside of Canada (because we do not have access to everything that is approved for PH here.) What if something unexpected happens? What if I am able to move out someday- because I would really love to? Am I no longer entitled to any of these things, or savings, because I got sick and became disabled? Does the government feel I am no longer entitled to have a future because of my condition?  Doesn't saving and preparing for the future make me responsible? Clearly I did not plan on this happening, nor did I want it to happen.

Let's examine divorce laws. If a couple were to get a divorce, one partner might have to pay spousal support (alimony) to their ex. The argument is that the other partner got accustomed to a certain lifestyle. Another argument is that maybe the lower earning partner had wasted potential, maybe they never went to school because they had children and stayed home to raise them. Thus, the other partner who worked (or is earning more) would be required to pay spousal support to their ex so they can maintain the lifestyle they had while married. I am not saying that it is unfair or unreasonable that people receive spousal support (because I have learned through all of this that I do not have enough knowledge to judge someone.) Although, I do think it is an interesting concept. I am not entitled to maintaining my lifestyle (even though I worked hard and got an education) because I got struck by metaphoric lightening. If someone could see the timeline of my life, they could see I spent half of my life working hard to prepare for my future.

It is strange being told that I am basically not allowed to have savings, or maintain/keep what I have accumulated. This disease has made me question whether I will be able to get married, move out, or have children. Now I am questioning if I will be able to afford these things, should I ever be lucky enough for them to happen. I feel very conflicted about my future for a magnitude of reasons. It is hard planning for the future when you are told not to invest too deeply into having one. When I decided to start living again despite what the doctors and statistics say, I have the worry of whether or not I can afford to live. I struggle with feeling like a burden, although I am graciously trying to accept that people help me because they want to, and  because they love me. I fear that now I will become an even greater financial burden. I've been with my partner for over 5 years. We talked about getting married before I got diagnosed. I don't know if I will ever get married now, but I hate the idea that he would be taking on my finical burden.

All things aside, for now I am fine. For now I am lucky. I know I have the support of my family and partner. I am also receiving a small amount of money for disability benefits from the insurance I had from work. (This will not last forever, and the amount is modest compared to what I made working full time.  The amount is actually close to what ODSP would have given me.) I will continue to save while I can, because I want to plan for a future. I want to plan for my future. For a while I debated whether I should make a board on Pinterest for my hypothetical wedding, or funeral. Recently, dreams of getting married have won. I have also made boards for interior designs that I like, because I want to move out too.

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