Jumping Through the Hoops of Getting and Keeping Disability Benefits

Nobody goes through life with the intention of becoming disabled.  It’s a path that demands the type of grit that stands in the face of derision, dehumanizing treatment, constant judgment and obstacles.  But as we know, our bodies can strip away the life we had before. We’re left to gather the tattered remains of our circumstances and forge a way forward. It may not be perfect, or even close to the life we envisioned, but it’s the hand we’re dealt to play.

We wear such limiting labels in this life, whether they’re assigned by others or by ourselves. Marginalized in a world that too often paints us as sub-human, we may feel we have to crawl for every scrap and crumb that’s cast our way. It frustrates our expectation that living with chronic illness and disability means having the same human rights as an able-bodied individual. Spelled out in black-and-white are all the ways a promise can be broken. You can do everything right, abide by the rules and life can still treat you unfairly. It can wreak havoc with your sense of safety, that age-old belief that you can achieve anything you put your mind to. It can feel like it comes down to whether or not the gatekeeper will open the door for you.

Hence here I am, heart in hand, with nothing more holding me together than the truth and hard-won integrity. A judge brings down the gavel that determines my fate. Their probing distance is how they reveal themselves. Those tiny flashes of discomfort, the reactions they can’t hide. It’s easier to be the ostrich, head in the sand, than to stomach the disquieting truth that disability is not a single snapshot, but exists on a spectrum, encompassing the visible and the invisible.

Disabled, they ask? Prove it.

And so I, like millions of other disabled individuals, jump through their hoops, fill out their paperwork, ride the telephone merry-go-round and wait and wait and wait. I wait for a sheet of paper to tell me what I already know but what I must somehow prove year-after-year, day-after-day, a humiliating process that rubs me raw and holds me back from opportunities I wish were mine again.

In the face of adversity, this is what I have to tell you. Sometimes there is no logic to discrimination or cruel behavior. They do it because they think they can, because you’re vulnerable and they wield power over you.  You can fight, but you won’t always win. You can be strong and have moments of incredible despair, when everything feels like it’s collapsing in on you. Those moments are not weaknesses. They are simply moments. And they are not you.

Your word is your worth. But for those who don’t honor their word, what is their word worth?

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