Friday, August 31, 2018

Disability in Slow Motion: An Essay and Response

http://brokenpen.net/aspielessons/disability-in-slow-motion/

I have a friend on the spectrum who also writes about his experiences with both autism and a sight-based disability.  His work is usually a mite shorter than mine, which makes for quicker reading and hopefully better comprehension.  Also unlike me, he has a pretty set negative opinion of the Christian church and its people.  We are somewhat more agreed on the terribleness of people in general, but as you'll see, I think it's more often incidental terribleness than actual targeted terribleness.  Onwards!

So, the first point about intelligence.  I actually have no idea what my friend's IQ scores look like, or what his scores would be in other measures (like EQ, or y'know, pretty much anything that doesn't measure book learning), but he strikes me as pretty smart.  I, personally, do have some scores to look at, and while I'm not at genius-level IQ, it's safe to say that as far as that metric goes, I'm well above average.  However, I definitely have a deficit when it comes to learning speed... so the smart phone quality comparison doesn't fit my specific situation.

I'm uncertain whether it fits on the whole, to be honest, because my mother, who was valedictorian in her high school class, and is not autistic, has this same issue.  Once we finish the learning process, we're very good at the thing we were learning and can then teach it effectively to others, but getting to that point can be a very slow, annoying process.  But let's assume the comparison does fit the situation overall (with some exceptions).

The next point is prejudice.  Innate prejudice is kind of an interesting subject, because as he points out, what you're prejudiced against changes with your level of education.  People with less education tend to discriminate more based on innate identity: skin tone, country of origin, male or female, and age, for examples.  Whereas people with more education (like, people that went to college, grad school, etc), tend to discriminate by chosen identity.  So, Democrat or Republican, liberal or conservative, pro-life (cough, pro-birth*) or pro-choice, and religious affiliation (or lack thereof).



It's worth noting that neither set of prejudices is a good thing.  As a more educated person myself, I'm inclined to say it's better to discriminate based on a person's choices than on their uncontrollable life circumstances... but A) I'm obviously going to be biased, and B) Seriously, discrimination is bad.  Any discrimination.

Why is prejudice against people with disabilities different than prejudice against skin color/ethnicity?  Both things are innate identity, rather than chosen identity.  I'm not entirely sure.  If I had to guess, it's because of that age-old tendency to victim-blame.  In the Bible, people with physical disabilities were assumed to have sinned terribly, and their disabilities were heavenly punishment.  There's even a point in the Bible where Jesus is asked whether a man who was blind from birth had sinned, or whether his parents had sinned.  There's literally no third answer allowed in the societal context (though Jesus himself did in fact give a third answer).  Victim-blaming continues to this day, though it's generally less sanctioned in church than it was in those times.

So those two points of the introduction done, let's get into the popped balloon ideas!

  • Innate worth

I agree with my friend in that being faced with a disabled person absolutely tests your belief in this, but not that the idea itself is a lie.  It's that, in my opinion, most people's definition of "worthy" includes perfect physical and mental health.  This is mostly unspoken in US culture, but it's literally everywhere.  Your supermodels, your TV stars, your celebrities, everyone pretends they're in perfect health (unless it's their thing to not be).

The dumbest thing about this idea is that most people won't meet the criteria for "perfect health" except for maybe a year or so around their college years.  Me?  I never have.  I've been autistic since before I was born, depressed since before middle school, and fighting an anxiety disorder since at least high school.  As I've aged, I've also discovered I have vitamin deficiencies, which led to achy knees, low energy, poorer sleep, etc.

  • Freedom of expression

This is true, to a point.  The unsaid bit is "as long as it doesn't hurt anyone else."  Hair cuts, broken arms, and temporary-seeming changes are one thing, but being autistic, or being black, or having lupus are entirely different.  I would tend to argue that people can actually feel slightly hurt by having to handle interacting in a nonstandard fashion.  So, if they're not comfortable with talking to a racial minority, this causes them anxiety, which is a form of emotional pain.

Now, I am not saying this is somehow the racial minority's fault, because it definitely is not.  I am saying that because that anxiety ensues, people are less likely to be okay with, say, ethnic styles of dress and haircuts, or less neurotypical forms of communication.  These things are covered under freedom of expression, but they're not okay to some people, sometimes, because of that discomfort.

The solution to that, in my opinion, is to raise children in a very diverse environment, where they learn to communicate with all kinds of people, and that all kinds of people are pretty much just people, whether they're black, Hispanic, autistic, Downs, old, young, physically disabled, gay, trans, or whatever.  You can teach adults this too, it's just harder.

  • Having kids

I've never quite gotten the "I wish you were never born" vibe from someone, but that might be a function of my disability being invisible, and the fact that I've gotten pretty decent at hiding it.  I've no idea if anyone's ever thought that sentence after interacting with me, but I hope not.  Either way, this is another facet of the insistence that everyone have "perfect health."

That said, "why would you bring anyone into this world if... <more suffering than joy> ...was what was waiting for them," is one of the reasons I likely won't ever have kids.  That, and the expense, and the fact that it's hard enough to manage my own life without adding a tiny defenseless human into it...

A thing my friend didn't note here:  some people with disabilities do want to have kids, and get some very strong negative reactions when they share that aspiration.  It's assumed that all disabled people will make poorer parents because of their disabilities, and further assumed that regardless of what kind of disability it is, they and their children should be aiming for that perfect health ideal.

  • "Fixing" people with science

I feel like this point might be more in reference to my friend's visual disability and depression than the autism.  While parents do continue to clamor for a "cure for autism," one is neither forthcoming nor likely in the truest sense.  It's been 30 years, and what we've discovered is that autism is a trashbin diagnosis and there's no single cause, or even a set of 6 causes.  There's dozens to hundreds of factors that have to align, and which factors those are varies by the person.

The visual disability, on the other hand, is a little more cut and dried... but of course not all surgeries go well, and advanced techniques are discovered too late to help some people.  And depression is...  well.  There's the pharmaceudical merry-go-round, where you spend 3+ months on a pill to find out if it works for you, and whether the side effects are worth it... and if it doesn't work out, you try the next one and use another 3 months of your life.

Then, too, some people go through the whole set of pills for their particular situation, and find that literally none of them work.  This is currently called "untreatable depression" which is bullshit.  It's only "untreatable" because the current system only wants to prescribe pills, rather than try things like LENS/neurofeedback and transcranial magnetic stimulation, changes to diet and movement, treating other underlying causes of depression...

  • God's healing

This is where my friend and I really diverge in opinions.  So, once again, there's a culture of idealized "perfect health."  And people with disabilities fly in the face of that.  We exist, therefore "perfect health" isn't an option everyone can pretend to have.

Personally?  I see the striving for perfect health as unGodly, an incursion of modern culture into religion.  God makes people in all sorts of different ways, with all kinds of different challenges, external and internal.  I've heard enough stories of people being blessed by learning to see through a disabled person's eyes, to know that God uses people of all kinds to accomplish his goals.  Sometimes, a goal can't be accomplished without a certain type of person, and a stereotypically "healthy" person is unsuited for it. Only with certain life experiences and circumstances might someone be suited for a particular job, and having a carefree life kind of lets you miss all that.

Thus, demanding that God magically fix a person, based on the stories of Jesus doing just that in the Bible, is not really a laudable Christian thing.  People like me, and like my friend, exist for a reason.  God does not promise any of us perfect health, piles of wealth, power, influence, happiness, and all the kids and grandkids we ever wanted, in this life.  That's our culture's ideals talking, not the Bible.

We're his servants, not his masters.  We're meant to do his work in the world, not have all our wants and needs personally attended to.  Heck, even alongside those stories of miraculous healing in the Bible, there was Moses with his poor speaking ability and Paul with his "thorn in my flesh."  (Also, Jacob was a coward, a thief, and a murderer, and Peter was extremely impulsive.) God didn't take those things away from either of them, but simply accommodated them where necessary.  They were effective, influential people despite those conditions.

I also disagree strongly with "a question mark is an enemy of most people of faith..."  I think faith goes hand in hand with question marks, and faith without doubt is only blind dogma.  Many of the Christians I know express doubt on occasion, over life circumstances, bad things happening to good people, world events, and theology.  Doubt comes with the faith, even for the best Christians.  It's very normal.  

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