Standing at the intersection of Asperger’s / autism & physical disability (or blessing??)

A disability, in itself, can be an advantage.  It can be an innate physiological survival strategy.

In fact, it can be a downright blessing.

Some might think I’ve misplaced my logic today.  I can hear some of the theoretical responses now, and they’re probably varied: “Say what?”

“What on earth is she getting at?”

“Where could she possibly be going with this?”

“When could a disability actually be a blessing?”

“My life is so much more challenging as a disabled person.”

At least, that’s what I would think, if I were my Pre-Asperger’s/Autism-Realization Self.  Besides being on the Asperger’s/autism spectrum, I also have a physical disability.   Today I’m going to talk about it.  Because of the nature of mine, I’ve come to view it in a new light.  And I’m going to talk about that, too.

My disability was, for a long time, a source of depression. In fact, it often made me cry.  Since it’s also progressive (meaning that it will get worse become more significant over time), it’s also been a source of anxiety.  How much worse is it going to get?  I agonized.  A lot.

To throw a little more gasoline on the fire, it’s also an invisible disability.  It doesn’t show on the surface.  And I’m very young to be in the stages that I’m in, so nobody expects it.  As a result of my disability, perfect strangers have treated me with disdain.  They treated me as though I’m “stupid” (please forgive the word; it’s theirs, not mine.  I will never own it.  “They” don’t get to win).

I am losing my hearing.  I first noticed it when I was 21, when I started screwing up words and names, thinking people were calling mine when they were actually trying to get the attention of someone whose name sounded similar to mine.  My head would swivel constantly, concerned that someone was calling my name, and that I was missing it.  I didn’t want to irritate anyone by inadvertently sending them the message that I was ignoring them.

I’m now 39.  This means that I’ve been slowly but surely losing my hearing for probably half of my life (if I first noticed it at 21, then it probably started a while before that).  I assumed that my hearing loss was due to chronic wax buildup (sorry for the gross visual!).  I heard about an ear irrigation kit.  I was excited to try it.  I thought it would solve the problem, and my hearing–and my life–would be restored, back to “normal “.

It didn’t.  It made no difference at all.  The world was still muted.  I still missed words.  I still needed the TV volume to be set at a much higher level than I knew was “normal”.  I still asked people to repeat what they’d said.  My hopes had been destroyed.

I was 30.

Now what?

I panicked.  I sunk.  Not necessarily in that order; the two emotions leapfrogged each other in one gigantic yawning darkness that threatened to swallow me.

The audiology results were even worse than I had expected: moderate-to-severe loss in the bulk of the spectrum, with an apex right in the middle of the range, like a deranged upside down bell curve.

(And, I was still 30.)

No way, I said to myself.  This can’t be happening.

Oh, but yes it could!  My father experienced the same, as had his father.  Well, between working around machines and other loud environments, I had written theirs off as an inevitable effect of their occupations.  I figured that I was in the clear.

But then I learned that my paternal grandfather’s sister had met the same audiological fate…

…and she hadn’t worked around any noise.

Oh shit, I thought. It runs in the family. It’s genetic.

Within a few years, I had qualified for state assistance in the purchase of a set of hearing aids and vibrating alarm clocks that you put under your pillow and other assistive devices.

For that, I had to jump through the understandable hoop of meeting with one of the doctors on the state’s list of approved disability service providers.

By then, I was 33.  I was 33, and getting hearing aids.  And their little storage cases.  And their little batteries.  And their other accessories.

The doctor was curt.  Not the most personable man, but I only had to meet with him once. 

He said the two magic words, the two words that would officially open the door to disability services.

“Yep,” he said, after assessing my degree of hearing loss.  “Permanent and progressive”.

That’s all I needed.  All I needed in order to obtain the devices that would become a part of my life.  And all I needed in order to die a little inside.

I had the ears of a very elderly person, at a very young age.

Within a few years, I could no longer handle the dissonant and inaccurate tones the piano made.  I had perfect pitch in my head, but distorted pitch delivered by my uncooperative ears.  The clashing between what I thought should be and what I actually heard was unbearable.  When several piano-playing sessions ended after a mere few minutes, after which I would shed heartbroken tears, I had finally stopped playing altogether.  Something that I had once loved, cherished, and depended upon as a purpose for living became a lost and neglected pastime.  And indeed, a thing of the past.

And another chunk of me died inside, a little more.

I know that this sounds incredibly ableist.  Please don’t be mad at me.  Please know that that’s simply what I experienced and where I was then, and how I perceived the course of the rest of my life at that time.  Please know that those aren’t my current feelings.  That’s not my current perception, nor position.

Things have changed.

This mystical, monumental change came about as yet another effect of my Asperger’s/autism discovery almost a year ago.

Realizations rolled in, in the form of a series of rapid-fire “a-ha!” moments.

I realized that the volume on the world is turned up too loud by default.  I learned that this was a common culprit behind my chronic irritability and increasing overwhelm.

I put two and two together and realized that that’s why I couldn’t wear my hearing aids for very long without getting inexplicably fatigued and short on patience and resilience–sure signs of neurological overdrive, as my post-doctoral neurology training had taught me.

I remembered what how relieved I was, in the early days of having my hearing aids, when each day came to an end and I could finally take them out and give myself a rest that I couldn’t describe at the time.  I remembered what a revelation it was for me to realize that I actually had more control over my own hearing than most people.  (Although please don’t take this to be any kind of bragging streak; I operate from a combination of a sense of empathy for my fellow Aspie/autistic community who become more easily overloaded by their better hearing and also a sense of wistfulness as I watch one of my significant sensory functions slip away.) 

I had a choice: I could wear my hearing aids…or not.

The choice was mine.

How much of the world did I want to hear?

I could make the call.

And I could change my mind at any time, as often–and as many times–as I wanted.

The audio part of my nervous system was at least partially under my direction.  I held a little more power over my own perception (or the effects of) my own environment than the comparatively helpless souls who had no choice but to be bombarded by their surroundings (ouch!  I feel for my neurosiblings with excellent hearing; I genuinely do!  Who says we lack empathy? 🙂 )

If I wanted to be sure to hear every word, I could put my hearing aids in, and let the world in with them.

If I needed a more dampened state, I could take them out, and turn off the world.  It would be like a calm blanket had settled over mine.

At times, that blanket is very welcome.  At times, it’s actually something I look forward to.

Because I don’t know what I’d do if I had to listen to every faucet drip.

I don’t know how I would fare if I could hear everything going on outside.

I don’t know how I’d survive the grocery store if I could hear every little nuance.

I don’t think I could stand it if I could hear the neighbors in the adjacent apartment/flat through the interior walls.

I’m pretty sure that I wouldn’t be able to concentrate if I could hear talking or other office noise from down the hall.

I’m not sure if I want to hear every dog barking or child playing or baby crying within a wide radius.

I wouldn’t get nearly enough sleep if I could hear every sound that the cats make.

Rather than a source of profound sadness, my hearing loss became an escape hatch, an exit route of relief.  My resilience fuse is a little bit longer because the world is somewhat muted.

I still miss a lot.  I miss my days of playing the piano for hours.  I miss the correct pitches that the keys should play when struck.  The TV volume has only increased over the past few years, and it keeps inching up further, as the state’s doctor’s prophecy comes true.  I have to ask more people to repeat longer phrases more often.  One day I might miss something crucial for survival, like the sirens of an emergency vehicle coming up from behind me while driving down the road, or an assailant sneaking up behind me, closing in to do me harm.  That’s my budding and growing reality.

And I’m constantly having to adjust to a new reality.  As my hearing loss drifts away, new adjustments must be made.  New coping skills must be implemented.  New self-checking strategies must be applied.

But the realization that this phenomenon isn’t all bad is relatively new for me.  Which means that I’m still getting used to that, too.

But given my system’s sensitivity to everything else, this is probably Mother Nature’s way of giving me some kind of break from the din.

Maybe this is just my brain’s way of justifying it logically in order to save me emotionally.  That’s very possible. But I think that the conclusion has merit, that it’s not completely lame or empty.

It might indeed be a psychological strategy to make some kind of peace or sense of a challenging situation, to claim (reclaim?) some sense of power over a situation in which I otherwise feel powerless.

But I think it’s more than that.  I think that my biggest disability may just become a valuable asset.

🙂

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