Let’s talk about disability insurance

disabilities_look-likeThis is a hard topic for me to write about, but: it’s important. And it also fits in with my mission to Shine A Light Into the Dark Places, the stigmatized places, the places no one wants to look at or talk about.

And one of those places is disability, and specifically, disability insurance.

I see sooo soo many people on twitter and other social media platforms crowdfunding things like – fish oil for their kid, or an audible membership, or a wheelchair, or funds toward a new apartment.

Look under the hashtag #DisabilityWishlists, and get ready to cry at all the things people need. And if you have any money to spare, which trust me, unless you too are disabled, you actually do, pick someone and send them something, no matter how small. You have no idea how much that will mean to them.

And I had the thought: why isn’t there some sort of fund for people who are sick so that they can get the things they need just to survive, if not to thrive?

And the answer is: it actually exists. It’s called Social Security Disability Insurance.

The problem is, contrary to popular opinion and the idea that people on it are lazy or are moral failures – spoiler alert: they’re not! – it’s really really really hard to get approved for disability. Really. Hard.

And I was inspired to write this post after I read a Facebook post by Charis Hill: Writer, Speaker, Advocate, who has the blog Being Charis. She suffers from Ankylosing Spondylitis (AS), a horribly painful degenerative disease. And she is fighting to get disability.

On Tuesday, 2/27/18, the day of her hearing before a disability judge, she wrote (quoted with permission):


On March 10, 2016 I applied for Social Security Disability Insurance (SSDI).

I was denied on June 6th, 2016.

I appealed this decision.

I was denied again on August 25th, 2016.

I appealed again.

Two nearly immediate denials are pretty standard for the disability process. Two nearly-immediate denials are more common than approvals.

In 2017, 10,000 people died while waiting for disability [emphasis mine]. In 2017, 45% of applicants were approved across the nation, and most of those were after waiting 2 years or more for a decision [emphasis mine]. There is a shortage of Administrative Law Judges, partly due to cuts to the Social Security Administration – this is why it takes so long to get a hearing. The huge backlog of people waiting will only continue to grow because of continued cuts to the Social Security Administration; all this at a time when the baby boomer generation is aging and applying at a higher rate than past generations simply because there are more of them.

I feel like I’m one of the lucky ones just to have gotten a hearing this “quickly,” even though there’s no guarantee of a positive outcome.

So, today, nearly two years after my application I will go before an Administrative Law Judge for a hearing on my case.

The judge assigned to my case had a disability approval rate in 2017 of 30%, down from 51% in 2010. (dSavannah note: This means that the judge denied 70% of cases last year, but only denied 49% of cases in 2010. That’s a huge jump in denials.)

I am broken. I am desperate. And I likely won’t know for a few months what has been decided for me about my future – good or bad. But this hearing is finally here. The only relief I have about today is that it will be over soon, and then I wait. Again. But this time I’m waiting for a final answer.

After this hearing is over I will have done all I could have done. In a few months I will know if it was enough.

And here is where I admit publicly, something I have done very little of, that I too am in this process. That I am disabled.

I have been embarrassed to talk about it. It’s embarrassing – tho it shouldn’t be – to admit that I have had to quit three jobs due to my health. That I’m no longer a “functioning” member of society, as our society measures it. That I’m now 95% housebound, and about 50% bedbound.

That I’ve lost practically everything that makes me who I am. That I’ve lost all of my successful careers (marketing, teaching at the college level, art, and writing/editing) because my brain and my body don’t work anymore.

I didn’t want to apply for disability, but I was urged to by several people. And I’ve only worsened since I first applied, so I’m thankful I did, because there is no way I could handle the details now.

Here is what I wrote on Facebook in response to Charis’s post:

openquote4Think getting disability insurance is easy?  Think again. It is hard. And humiliating. And inhumane. And takes years.

I don’t like to talk about it, because I don’t want to admit I can’t work. That my illnesses have broken me and stolen my skills and my brain and my health and my life.

But they have.

I don’t want to admit that I need help.

But I do.

I had my hearing in front of a disability judge on Monday, 2/26/18, after first applying in June, 2015 and getting two denials. (dSavannah note: this office denied 53% of cases in 2017. I’m frightened of my odds.)

I haven’t been able to work since December 2014. That means ZERO income since then. Savings gone. Lots of medical debt on my credit card.

If it weren’t for my husband and those of you who kindly donated to my gofundme campaign a few years back, I would not be here.

In plain English: I would have killed myself.

So next time you start ranting about lazy people taking advantage of the system: stop.

I’ve been working since I was 10 years old. Paid my way since I was 14. Paid my way through college and undergrad. Worked my ass off. Everything I own, I earned. I’m the quintessential “pulled myself up by my bootstraps” story.

Only to get sick. To become disabled.

And now I wait some more (likely til June!) for a decision if the state of Georgia will award me benefits.

And even an approval doesn’t mean the insurance couldn’t be taken away.

This could be you someday.

To learn more about Charis, please visit her blog or her Facebook page. Ways to support her can be found on this page.

If you are disabled or have chronic illnesses, this blog, How To Get On, gives a lot of helpful tips on getting on disability, as well as other tips on getting help with food, medical care, and being homebound.

If you would like to support me and my habit of eating, taking medications, trying to stay sane, and going to doctors, you can buy me something off my amazon wish list (which includes medical things and fun things) or send a few dollars to my PayPal account. (I have resisted putting ads on my blog, but I am going to have to as soon as I can figure out how to help pay for hosting, etc.)

And finally, I literally copied the posts off Facebook once Charis gave me permission to quote her, then added my additional notes today, and I’m hitting “publish” regardless of my trepidation. (And possible typos.)

More ramblings / other posts you might want to read...


About dSavannah

~ #disabled #spoonie fighting numerous, chronic, painful #InvisibleIllnesses ~ also #wife #feminist #ally #advocate #papyrophiliac #DogCatTurtleWrangler
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