The Reality of Needing to Be on Disability
I’ve been debating whether to risk writing about this for about two months. It feels incredibly, personally risky.
Judgment can be so fierce when it comes to this topic.
Disability. Financial disability support from the government.
I live in Canada, and see some similarities and some vast differences in how permanent disability works in different countries. But the stigma and the judgment, the anger and the disregard for others is just as bad in many of them, from what I’ve seen. So I want to make a few points to try to spread some awareness.
1. Disability payments from the government are usually not enough to live on. The idea that sick people are eating bonbons, living the high life and laughing about how rich they’ve become by living/ripping off the system is just ridiculous. And insulting. I could make more money by working part time.
Unfortunately, my body does not allow me to work. I loved working. I was good at it. I felt accomplished. And I made enough to live on. The reason I qualify for permanent disability is because my doctors have deemed I will never be well enough to work again. It’s a hard pill to swallow. It sucks. My future, at this point, barring something miraculous, does not include my health or my pain, improving. Being judged for needing to still have food and shelter is really harsh on top of that reality.
2. Judgments about what type of phone, clothing, shoes, or purses someone has are completely unfair and uninformed. I have an iPhone. I’ve been judged about having an iPhone. However, the reality is that my iPhone is cheaper than the “pay as you go” flip phone I used to have. My iPhone cost me $0. My plan is cheaper and always the same price every month. With pay as you go minutes, I was always running out of minutes every month because I couldn’t afford to buy more.
I am not a chatty phone talker. I have severe phone anxiety. I do not call people just to chat. Ever. Yet, it was costing me a fortune to simply keep in touch with my doctors, my disability worker, my dentists, my pharmacy, my family. It saves me about $100 a month to have my free iPhone and plan, compared to what I had to pay for my cheap flip phone each month… and with my iPhone, I never wind up running out of minutes, unable to use my phone, unable to call my doctors. A phone is essential. I can’t afford both a landline and a cellphone, and it is safer for me to always have a phone on me.
I also have a really beautiful purse I’ve been judged for. The thing is, this nice purse was a gift for me. My friends all pitched in $20 for my birthday present and surprised me with a gorgeous pink purse. I would never be able to buy such a thing for myself. Never. It means so much to me. It’s my favorite color and my friends picked it out just for me.
I’ve been openly judged, quite a few times, for having this purse. The next time you go to judge possessions in this way, please realize there can be a lot more to the story. Don’t automatically assume the person is a hustler.
3. It is really hard on the pride to apply for and receive disability. There’s the stigma, but even more than that, I used to pride myself on my independence. My strength. My perseverance. My health took some of that away from me, and it is hard to deal with. On top of that, I need to report every tiny detail about my financial and personal life to the government, and they can request more at any time. They can also decide to take away the help I receive at any time.
It is a scary, unpredictable and invasive way to live. If I did not have to live this way, trust me, I wouldn’t. I don’t mind that I have to give all of my personal information, I understand the need, but it still feels lousy. I am so incredibly grateful for the financial and medical help I receive from the government. I’m not complaining, I’m simply stating that as a proud person, it is a process that can strip you of dignity. But without this help, I would have nothing. I would be homeless and starving.
Whether I get disability or not, I still won’t be able to work. If it is taken away tomorrow, I won’t be able to just suck it up, push past my pain and illness and go back to work. No. If that were physically possible for me, I would already be doing that. I’d be working.
So I take this risk and write this, knowing it could lead to me seeing some comments that judge me in the exact ways that I’m asking to not be judged. Despite my explanations and my pleas for understanding, I know I may read some comments that are hurtful. I’m taking this risk anyway, with the hope that it will help even one person see this topic with more understanding and empathy. I also take this risk for my fellow chronic illness friends who could use another voice supporting them. I want to show them they aren’t alone and that I, at least, understand.
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Thinkstock photo by Ekaterina79.
Lisa Prins is a binge hobbiest who is constantly throwing herself into many different projects. When she is not well enough to do one, she will find another. Music is her main love. She is a classically trained pianist, vocalist, songwriter, composer and ukulele player. She also enjoys writing, drawing, painting, crocheting, pixel bead art, photography, jewelry making, sewing, playing video games, robot building, and a number of other hobbies. Love, compassion, friendship and understanding are most important to her. They are what gives meaning to her life. Lisa was born with a congenital kidney disease called renal tubular acidosis. This combined with asthma, chronic infections, idiopathic angioedema and anaphylaxis have shaped her into a person who is thrilled to experience every bit of life and love, every sunset and every little joy that life has to offer. She lives with her incredible partner, who is, and has been, her love, her best friend, and, at times, her caregiver. She decided to start contributing her writing in the hopes she can help others know they aren’t alone, and help those who aren’t chronically ill better understand the people around them who are.
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