Hi. Can I tell you about my day? I
got up, went to my ridiculous full time job, I came home, I laced on my sneakers and
I ran four miles. (As a sidenote—the winter really made me forget how hard
running is before you get into that awesome July running shape).
Now I’m writing my world renowned
blog. I don’t know if it’s the best blog on the Internet, but I will
confidently state it’s the best blog with a title referencing a song by The
Scorpions. I’ll take it.
Anyway, here is the punchline to
my description of my day: I’m disabled. Yep. “But…..you said you work a full
time job? And you ran four miles? You’re not disabled!”.
But I am.
The government says I am and they
are always right. I am legally blind. Under social security disability rules, I
meet listing 2.02A for central visual acuity worse than 20/200 in my better eye
with correction. (Technically they call it the “best” eye which I believe is
grammatically incorrect unless they are assuming one has three eyes…….wait………is
there a dirty joke there? Maybe a huge Third Eye Blind fan?). My acuity is
20/300. So I’m legally blind. To paraphrase another blind guy, signed, sealed,
and delivered I’m yours. Get your stamp and mark “DISABLED” on me. I just had
an idea…..I’ve always sworn I would never get a tattoo but a DISABLED tattoo
might be pretty sweet….
But here’s the thing. I’m not
disabled. No, I’m not going in circles, there’s a logical thread here! I work a
full time job. I run. Now I didn’t drive to and from work—I got a ride in the
morning, took the bus home in the afternoon. But does that make me disabled?
Don’t be silly. The experts have been stumped.
But to add to the randomness of it
all, if I had been born a few years earlier, I would not have been born legally
blind according to the government. They widened the definition of legal
blindness in—I think—1969. Must have been all those Woodstock acid tripping
casualties or something.
But it gets even crazier. I work
as a Vocational Disability Examiner for Social Security. Everyone tells me they
are disabled. Most cases I tell them they are not. So someone the government
believes is disabled and unable to work works in a job for the government telling people who say they are disabled and unable to work that they
are not diabled and able to work. The world is one wacky place.
Point is there is a very, very,
very thin line between the disabled and the non-disabled. Even our decisions
are…..a bit subjective. I read a claim this week in which a person already on
benefits had been denied on his initial claim because the psych consultant
thought his drug use muddied the water so much that his schizophrenic symptoms
couldn’t be proven to be caused by his diagnosed schizophrenia. On the appeal,
the next psych consultant who reviewed it believed that in fact his
schizophrenia trumped any negative impact of his drug use. Which comes first:
the chicken or the egg? That conundrum regularly separates the disabled from
the non-disabled among us.
Why should anyone care? I don’t
know. But disability is skyrocketing in America. The number of people on
disability is about 14 million and growing. Welfare was "reformed" by essentially converting being poor into a disability. Now the whole world thinks they are
disabled. Parents file for their kids saying they are disabled by their asthma and ADHD. This is the reformed brave new world we live in. People learn to believe they are disabled because it's the difference between feeding their kids or not in many cases. Do you think that might be a disincentive for poor parents to make every human effort to encourage their kids to succeed? The government will never reward them for that. I'm not saying it's an active conspiracy to keep poor kids down and discouraged, but if it was we couldn't possibly have arranged it better. People say to me, “How do you deal with all those people trying to scam the
system?”. I say, “You don’t understand, for every scam artist there seems to be
ten people who genuinely believe everything they say! America is becoming
Disabilitypalooza but Perry Farrell didn’t organize it so it’s not nearly as
cool!”.
But me, I've strayed from the true
path and I hardly believe in disability anymore. I’ve become radicalized. Don’t
read any further if you can’t handle the shocking truth! If you don't believe Plymouth Rock landed on you, this might not be your cup of tea. Disability is the
opiate of the masses! That’s right, move over religion, there’s a new sherrif
in town and it’s name is disability. As long as poor people or those with any
health issues believe they are disabled, then the problem can’t be society. It
can’t be discrimination against them. It can’t be people using their supposed
disability for their own financial or political gains, it can’t be classroom
size disparities, etc. If they are disabled it’s no one’s fault. The term
disability almost takes on Biblical proportions. Since none of us are Jesus and
can make the dumb speak, the blind see, or the lame walk, then there’s nothing
to be done. Disability may be the enemy to change and reform and evening the
scales as far as they can possibly be evened. Fatalism is the enemy of progress
and evolution and is there anything more fatalistic than the very concept of
disability?
Can I give another example I just
thought of? I have a friend who works as a counselor in a mental health clinic
in a poor area. She once said she often felt disillusioned because, “They (as in patients) don’t
want to get better”. She wants to help them get better, but they just want to
be disabled, collect their benefits and go on their way. The counselor in
question…..is blind. Totally blind. So again, what makes someone disabled? Is
it simply the desire to get better or not get better? And are the benefits
hungry folks trying to suck the system dry or are they just demoralized—and is that what actually makes them disabled
if they are disabled at all?
Okay, the above paragraph is not
the whole story. Are people who are mentally retarded simply limited by their
own self-doubts? No. Is a 55 year old who worked construction his whole life
before suffering a stroke and being left in a wheelchair simply lacking in
ambition or can the fact that he is a paraplegic combined with his age and lack
of training for sedentary jobs be definited as a disability—in the objective reality
sense of the word? Yes. I’m not going to
claim disabiily is a myth—as much as I would love to. I'm also not claiming the government should stop taking care of those who can't take care of themselves (the job market itself is disabled and can never serve an entire population of our size no matter what) but maybe it should be a simple means test like it used to be instead of making people grovel for money by proving they are disabled. Might that be having actually far worse psychological effects on us as a society?
But I think I am going to claim this: believing too much in disability is not compassionate; it’s the opposite of compassion. Compassion can be a very tricky thing because many people do genuinely love serving others. Selfless altruism does seem to activate all kinds of dopamine in many people’s brains. And I’m not knocking that in any way. But many times services to others can risk becoming counter-productive just as clinging parents can be counter-productive. Are clinging parents ever consciously trying to harm their children? Probably not, it’s just that they love being there for there kids so much that they can’t stand having to accept that what their kids might need most is to not need them as much.
And along similar lines—and
speaking of Jesus—there’s something else about human psychology. Here is his
parable of the lost sheep:
"Which of you men, if you had
one hundred sheep, and lost one of them, wouldn't leave the ninety-nine in the
wilderness, and go after the one that was lost, until he found it? When he has
found it, he carries it on his shoulders, rejoicing. When he comes home, he
calls together his friends and his neighbors, saying to them, 'Rejoice with me,
for I have found my sheep which was lost!' I tell you that even so there will
be more joy in heaven over one sinner who repents, than over ninety-nine
righteous people who need no repentance."
— Luke 15:3-7, World English Bible
So…….possibly Jesus was just using
this a marketing tool to ex-convicts. “Don’t worry, you are eligible to buy
this product too! Act now because supplies are limited!”. But there is
something interesting he suggests: that we love the lost sheep more than the
sheep that are never lost precisely because they get lost. Disabled people are
sort of modern day lost sheep. We love them in similar ways. Look at all the
roles that win Oscars—trophy hoisting actors are always playing people with speech impediments,
Cerebral Palsy, autism, schizophrenia, serial killers, etc. (Don’t think being
a serial killer is a disability? Didn’t you know it’s only a symptom of
Antisocial Personality Disorder? Please get with the program).
But what if something else is
true? What if many people who are lost sheep or would-be lost sheep consciously
or subconsciously believe Jesus is correct: that the lost sheep is more valued
and beloved than the ones who are already in the flock and stick within the
flock forever? In some cases, they become rebels and possibly change society. But
in other cases, they might passively embrace being a lost sheep a little too
much. Jesus don't want me for a sunbeam, but don't expect me to cry for all the reasons we have to die. And possibly these lost sheep will indeed be loved all the more for it, but maybe not.
And even if they are, they are lost! They can’t necessarily participate in the
flow of life if they cling to such a status. They might be less likely to have
careers, kids, a dog, a ping pong table, etc.
I’m meandering quite a bit here
and I’m too tired to pull all this together more neatly—what with my hard work
serving the fibromyalgia suffering public and my amazing athletic endeavors.
Possibly I’m really talking about myself. Even if I say I reject the notion of
being disabled, that I suspect such labels are often designed to help those
serving rather than those being served (mainly in the form of creating social
service and legal jobs to deal with serving or adjudicating claims for the
massive ocean of people in line to become disabled), and even if I say my full
time job proves that the experts are idiots………has there always been a tiny part
of me that has felt slightly disabled? Not because I really am, but because I
learned early that society defines someone who is legally blind as disabled and
might I have internalized that to some degree? I don’t know. If I ever do write
a book, as people often encourage me to do, I think I’m going to write probably
a fictionalized account roughly inspired by the mixed up, early to mid 20’s
version of me—when I was in my prime Lost Sheep phase. But it would be the
opposite of an “overcoming a disability” story, rather it would be about
overcoming the false label of being disabled and the distorted perceptions of
ourselves that can result from it.
The moral of the story……is I
shouldn’t write blogs when I’m tired on a Wednesday. And also it’s important to
be a staunch skeptic when it comes to disability! It’s not conservatism to be this
way, it’s not trying to sweep people’s problems under the rug, it’s taking
seriously the notion that labels and perceptions create realities, and
well-meaning labels—those applied to us and those we apply to ourselves—can
often harm us far more than anything about us that created the label in the
first place. Or, to put it another way, avoid the scenario described by Eddie
Vedder in that song from Pearl Jam’s first album…..
“She seems to be stronger;
But what they want her to be is
weak.
She’s been diagnosed by some
stupid FUCK.
And mommy agrees!”.
….of course Eddie seemed to enjoy
wearing the crown of thorns long after he was a rich and famous rock
star with girls fainting over him. So who the hell knows?
