Rand Paul Is Running On Ableism

Paul may have a national stage from which to spread his ableist and ignorant statements, but he isn't the only one thinking them.

Earlier this week, Rand Paul officially announced his bid for the 2016 presidential election. And, while there are many solid reasons not to vote for him, his demonization of the disabled should be of primary importance to anyone who suffers from a disability or knows someone who does. 

In January, while speaking before a group of legislators in New Hampshire, Paul claimed that the nation's disability insurance system is beset by fraud:

"The thing is, in all of these programs there’s always somebody who’s deserving, but everybody in this room knows somebody who is gaming the system. What I tell people is, if you look like me and you hop out of your truck, you shouldn’t be getting your disability check. Over half of the people on disability are either anxious or their back hurts. Join the club. Who doesn’t get up a little anxious for work every day and their back hurts? Everybody over 40 has a little back pain."

While Paul's statistics are clearly in error, and in fact Social Security Disability Insurance (SSDI) fraud is estimated at less than 1 percent, Paul certainly isn't alone in his nagging belief that disability recipients are, at best, exaggerating their pain, and at worst, making it up. 

While I don't look exactly like Paul—mostly because I lack his pompous smirk—I look healthy enough and I can even get in and out of my car. But, shockingly, the ability to get in and out of a vehicle doesn't equate to the ability to work a full-time job.

I was born with mitochondrial disease, but it took me 33 years to put that name to my collection of seemingly disconnected symptoms. My mitochondria, the powerhouses in almost every cell in my body, simply don't produce enough energy. I live in a near-constant state of "brown out," where my body struggles to produce the energy each system needs to function, and through time it will only get worse. Mitochondrial disease is progressive and there is no treatment or cure. 

While mitochondrial disease may be rare, "invisible illnesses" aren't. Whether it's Lupus or Rheumatoid Arthritis or Ehler's Danlos Syndrome or another of hundreds of disabling diseases, it is estimated that approximately 96% of people who live with a chronic illness suffer from one that is invisible (2002 US Census Bureau). While these diseases may not lead to the use of a cane or walker, they still often interfere with activities of daily life and employment. 

As offensive as Paul's statements are, they are especially painful because I, like many, have experienced the same ignorance from strangers. I have had a note left on my car informing me that I am not disabled and should be ashamed of myself for parking in a disabled parking spot (with my state-issued placard properly displayed). I have been accosted by an airline employee who screamed at me and accused me of "joy-riding" while using a wheelchair in an airport. And I have seen the stares, raised eyebrows, and averted eyes when I step in and out of a motorized scooter or wheelchair. 

Paul may have a national stage from which to spread his ableist and ignorant statements, but he isn't the only one thinking them.

What Paul and his sympathizers fail to recognize is that there is a crisis facing Social Security disability, but it isn't fraud. It is the fact that, in a system with less than 1 percent of fraud, the vast majority of applicants are still denied at least once. In fact, from 2003 through 2012, the SSDI approval rate across all levels of appeal was only 38 percent.

More troubling is that, while processing times vary by state, it can take as long as two years from the initial application to be approved for benefits, particularly if your case requires a hearing. Wait times simply to put your case before a judge are commonly in excess of one year, and cases are only referred to hearings after being denied twice at the administrative level. 

Before my disease progressed to the extent that I was no longer able to work, I had a satisfying and enjoyable career at a large software company. I had flexible hours and I was able to primarily work at home, but eventually I simply couldn't keep up. Still, when I left work on medical leave, a part of me still hoped that my disability was only temporary. Instead of giving up, I spent a year going from doctor to doctor fighting for answers that I believed might lead me to a cure. While I eventually found my answer, it unfortunately cemented my disability instead of offering me a cure. 

By the time I finally applied for SSDI, I had multiple highly-esteemed physicians who gladly wrote declarations in support of my disability. Even so, I was denied by SSDI, and then my appeal was denied. It was only after a hearing that I was approved for benefits, 14 months after I initially applied. And, let's not forget that gainful employment during that waiting period automatically disqualifies you from benefits.

How you're supposed to survive and feed your family while waiting for benefits, I'm not entirely sure. 

Contrary to what Paul and his ilk believe, receiving disability benefits is not easy. Sitting in a court room listening to a court-appointed medical professional coldly summarize my health issues was one of the more unsettling moments in my life. While I was "lucky" to be found disabled and to begin receiving SSDI, my monthly benefit is only about one-quarter of my former salary. After ten years earning a respectable salary in a career I enjoyed, work would be eminently preferable to living in poverty and struggling to feed my children. But, no matter how quick Paul is to dismiss disabilities like mine, they are real and no amount of wishing will wish them away. 

Instead of following Paul's shaky lead, I urge politicians to use this opportunity to open a dialogue about disability. Let's evaluate the experience of the disabled and explore how SSDI is failing a vulnerable population. Only, this time, let's start the conversation with facts instead of fiction. And maybe a little less paranoia. No, Rand Paul, we scary disabled folk aren't out to scam you or SSDI. 

And we aren't going to vote for you, either. 

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