We have that one friend or family member who refuses to play by the rules. You know, the person who, instead of discarding one card, discards two, or the person who rolls twice. They break the rules and most of the time “get away” with it. But there are some rules that you can’t or shouldn’t break because it will cost you more than you realize. Go to jail, do not pass go, and do not collect $200. In the disability world, we have more of those rules than people realize. And in this post, we are going to talk about some things, because too many people lack the understanding of what it really feels like to be part of this community. They also don’t understand how much the game changes every time there is a new “player” added.
The number one thing I hear day in and day out is: Society shouldn’t have to pay for the disabled to have free money. If they can work, then they should. I agree to an extent; if they are able and want to work, then they should be allowed to. It’s not really us who have a problem with “us working”. It’s the very people who say we need to get off our butts and do it. One of the employment issues is that we don’t get hired… we get placed. Which means we really don’t get to pick where we work. Some employers avoid hiring us because we are a liability, but most don’t, since it’s based on productivity. (and of course they can’t say any of ot cause then they have to worry about discrimination laws, but we know the truth) Look at it this way: Cindy was interviewed to stock 10 aisles, but Cindy has a disability that could cause her to go slower than other workers. She can only stock 2 aisles a day at best. But Karen was interviewed too, and she can do more than 10. Who do you think is getting hired, Cindy or Karen?
`But that isn’t the rule that we have to go by. The rule is this: if you find a job, you can’t work more than X amount of hours. So no overtime or no covering for coworkers. If you do, then it can affect your benefits. Basically, you can work, but for smaller hours cause if you work more than that, you break a rule and could lose the “game” and all the things that could keep you afloat.
Next rule: Save money, just not over the “magic” amount; it, too, can affect your benefits. If you want to save money to buy your own home, you won’t be allowed to save over the “magic number.” Or you have to get a special account known as an ABLE account with the 1 specific goal in mind. Your account can be used only when you are buying a house. If you change your mind, we will need to close your ABLE account, send the money back, and you will need to start over with the new approved budget and goal.
Another rule: Having romantic relationships, BUT DON’T GET MARRIED ON PAPER because it will affect your benefits. That means you finally meet the one you love (cause it’s sooo easy, insert eye roll) and then you’re told that if you get truly married, it affects your benefits. Many people tuned in when the TV show Born This Way aired as it showcased Christina’s wedding, but that is the exception and not the rule. This wonderful thing is called the Marriage Penalty Act. (https://www.congress.gov/bill/119th-congress/house-bill/1389/all-info) Basically, when anyone who is not disabled gets married, their money gets combined to equal the household income. But when two disabled people get married, they get combined, then cut by 25%! Imagine that! You get 700 dollars from SSI, and then you get it cut by 25%, which drops you to 500 for you and your spouse to try to live on for the month. So we get told to do 1 of 3 things: don’t get married, just stay dating. 2. Stay engaged basically forever 3. Get married and deal with the benefits cuts, which can be catastrophic to certain people. And don’t even talk to us about kids. I know someone who had to have a lawyer present after she gave birth because she was told that she wouldn’t be able to hold her baby because of her disability. Despite being told to find love and have a family, we get detoured and have to go through so much red tape.
The misconception is that because we get SSI, our lives are easy, but SSI is just money that is made to help, and we do have to work for it; we just work differently for it. We have to fight every inch of the way, and every victory is short-lived, because society or our government finds new ways to push US back.
Tell me again how that “easy we have it.”
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