I have been thinking about it, and though I live with daily, unrelenting pain, I am still in a position of privilege. I know that sounds weird, considering the breadth of health problems I live with. On extra bad days, I try to remind myself of my luck.
You see, most people with disabilities in this country are living on less than poverty-level benefits. I am not going to detail why I think this is, since the reasons are myriad. Others speak much more eloquently and knowledgeably on the subject.
I can only address my experience and what I see as my privilege. I received my first SSDI check in February 2013. I didn’t have to jump through any hoops. I only saw the doctors assigned by the Social Security Administration and was approved without any fuss or muss.
Now, this can mean two things. First, I am probably way more screwed up than I think, and, second, the system worked for me. It worked because it was designed for me. That is, it was designed by white men for white men.
Yes, that is a pretty broad statement, but I believe it is rooted in fact. Let’s start with pain. Mine was never dismissed and was simply accepted as it was. Next, my mental illness was real, not some moral failing.
This is not to say I don’t suffer from these maladies and that it isn’t disabling. I am just relating that my suffering is recognized while many others’ isn’t. Forty years of employment before my epic breakdown also granted me financial advantages (yes, I believe systems of employment are also designed by and for white men).
Of course, no one is getting rich on SSDI, no matter how many years they put into the capitalist engine, but I was going to be much better off than many of my peers. Added to that, my dear Diane was still employed, so I didn’t have to worry about health care either.
This is my privilege. I was never left wanting for care, financial or health. I was never homeless, trying to negotiate a system that makes many assumptions when it comes to accessibility (I always cringe when the solution is ‘let’s make a website’ for obvious reasons).
I never had to worry about what I was going to do if I had a flare-up or breakdown that would leave me hospitalized. Sure, like every citizen in the US of A, I am still going broke from medical expenses. I can get immediate care when they do a wallet autopsy.
Yes, this country makes it hard on everyone with a disability in all strata of life. It is just much harder for some because the system has made it that way. There is no incentive to change it.
When I have had day after day of unrelenting pain or I am deeply delusional (I am always the last to know about delusions), I try to remember that all I have to deal with is my illness. Ultimately, that is what my privilege grants me.
This is not a case of ‘well, there are people worse off than me’ as much of it is recognizing that when I was looking for a hand up it was there. That hand isn’t always there for everyone else. It should be.
Remain Lost 