Talking raw, talking real: the challenges related to disability

My best friend in school would wake up in the morning and GO. She’d open her eyes, sit up, get out of bed, get dressed and that was it – her day was started.

I thought about that – just… like, wow… open your eyes…sit up…get out of bed..dressed. Over and out, that’s it!

My day starts with me opening my eyes, fumbling for my glasses first. If I can’t see with my eyes, I can’t see with my ears. At some point in the morning I put on my hearing aids and turning them on turns on the world.

Pre-hearing aids, it’s a pleasant sort of soft silence. I like it. It must be how it is to hear out of your own ears? Only with sound added? I dunno.

After the hearing aids, it’s sharp and tinny and everything is jarring. Sounds I hadn’t heard at all come into focus and ‘oh! The alarm was beeping?!’

That’s the reality of the glasses/hearing aid duo that are a part of my framework. Hearing aid batteries, feedback, nervousness about water and my hearing aids, cleaning moulds and all of that come into play, but for the most part, I’ve been doing this for most of my life. I have this down.

The other aspects of disability that affect me are the TBI (Traumatic Brain Injury), the PTSD (Post Traumatic Stress Disorder) depression and stuff. These are not as straightforward as putting on glasses or hearing aids. They are all to do with my brain and are just… trickier.

TBI was a puzzle. Growing up, I wondered why I would fall asleep in class (or worse, work), and wondered why, despite the fact that I was academically successful, I would just space out at remembering things, why I’d go blank under certain light, why I couldn’t seem to function or focus without the soft lights and background music. It wasn’t until I was an adult and working to help someone else receive workplace disability accommodation for their TBI that I connected the dots: ohhhhh…….so that’s why! I took myself down to the hospital and had myself tested to be sure and bingo!

Since I had already figured out and employed ways to help myself succeed, it wasn’t life changing in the sense that I had solutions to problems – it was more putting my finger on the slippery eggshell in the bowl of eggs: it was addressing this weird thing that I had going on.

PTSD is a different story.

It started really hitting me hard after I had Micah. I wasn’t drinking myself into a blackout every night anymore (I wasn’t drinking anymore at all for that matter), I wasn’t doing drugs, I wasn’t self-medicating myself into a place of oblivion.

I had a great job, I was in love, I was pregnant and very happy to be pregnant. I was clean, sober, and BAM! It hit and just kept on hitting, and hitting and hitting and it hasn’t really stopped. I can’t sugar coat it: it’s horrible and it’s a struggle to stay in control sometimes. When it gets really bad the urge to hurt myself is strong simply because the entire mess is so spiritually and mentally painful that I want to escape.

Should I be therapy?

Well, according to mainstream society, I should be. I was in a group for adult survivors of sexual abuse for over a year, I received a lot of therapy and medication for a while. It helped me by giving me some tools and it was SO GOOD to learn that the crazy-making pieces within my head are just normal, given all that happened with me.

At this point, it’s more a matter of slow healing: maintaining the tools that I have in place. Living in the country is a huge help, exercise is too. Doing things that scratch my creative itch. This is ongoing, a daily affair and it’s far and away the most challenging disability that I have.

Two Categories of Disability

I personally think that there are two categories within disability: there are the ones that are pretty straightforward – you just need to figure out what you need or how things ‘tick’, you balance the ‘tock’ and there you go. Being deaf falls into that category, and I think Down syndrome does too, at least as Moxie has it, sans health issues. These disabilities are about getting the right hearing aids, addressing interesting learning styles, figuring out which pieces of “syndrome” actually mean “accommodation is necessary here”.

Like I said, it’s pretty straightforward.

Once you’ve understood the pieces of this puzzle, you can look at the pieces and celebrate it – it’s SO COOL! Dwarfism, OI, Cerebral palsy, Blindness, Deafness, Muscular Distrophy, Post polio, all of these fall under this umbrella within my own way of looking at things.

Then there is the second type of disability, and that’s the one that just feels hard. It doesn’t lend itself to solutions easily, it brings pain more than a unique way to experience the world. It feels more like systemic imbalances or disease as in, “dis-ease”, it’s hard to find something to celebrate in it. A lot of mental disabilities fall under this, like depression, PTSD, bi-polarism, as well as diseases that take so much from you – like AIDS, Cancer. I don’t care for these.

The System

So far I’ve been talking about disability from a personal persepctive, what is challenging for me on a one-on-one daily basis. When I’m out here in the rural country, those pieces are what rise to the surface for me.

But when I live in an urban area, it’s all different.

You see, the absolute biggest challenge with regard to disability that I tend to face comes from other people. It comes from access, from a society that does not make the playing field level for all.

My deafness and TBI are not big issues on a day to day, I don’t even notice them for the most part. But check out this scenario (which actually happened a few years ago): I needed healthcare, my kids needed healthcare. We had a low income. My husband worked full time during business hours. Needing to connect the dots, (and here I’ll switch to writing in a present tense) –

I get on the website to get the kids and I hooked up to a plan. The website says I have to call. There is no other option. I get out the phone, the phone reacts to my hearing aid and it’s like a jack hammer blaring in my ear. I get a phone tree. I wait, press, do it, tears are starting to form, anxiety is rising, my TBI is triggering too from the ‘muzak’… I strain to hear, strain and strain and the pressure is increasing in my head and I’m starting to get sleepy… oh GREAT, a PERSON! And they tell me that I have to call this other number, no other option, that’s what I have to do, no way around it. I’m exhausted and I hang up and fall asleep. When I wake up I can’t do it again, the kids are going wild anyway, okay, I’ll do this tomorrow.

Two days later and I think I have the stamina to try again and – oh crap. It’s Saturday. Okay (*slight relief! Not today!*) and so on Monday I call again, the other number this time, go through the whole rigamole again, my ears are hammering, the tears are forming, the pressure is building, get someone on the line and they say, “you can’t do it from this number, you need to go to this place and apply in person…”

Huh.

I collapse and fall asleep from the pressure which had built up from the phone, wake up, I cry and don’t know what to do. A day or two later, I get the kids into the car, try to find the place I’m supposed to go, try and find parking, get the kids out…find the place, wait for an hour (struggling to keep the kids in line the whole time), get the person who says, “noo, nooooooooo, you need to be sent something in the mail and you need to fill it out and then call this other number and that’s what you need to do”

And that, my friends, is how we went without health insurance for so long.

Which was also one of the reasons why we were going to leave the United States; I simply could not make things work, my disabilities were too big, too incompatible with this system here. I would like to remind you that I graduated from university with honors at 19, I have a Master’s Degree in International Management, I can speak, read and write Japanese and can get by in Chinese. Let me tell you, traveling in China by bus, by yourself, is immeasurably easier than dealing with the American health care system when you have a disability.

…and after The System…

After The System, we have the bloated monster called “Prejudice” . Prejudice is a close cousin of “Discrimination” which has a twin called “Segregation”.

These guys tend to work in tandem and they are hard to beat. You’ve got a school or workplace that thinks you can’t do something because they haven’t heard of anyone with x,y.z disability doing it – and it’s like, WHY THANK YOU for telling me what I can or cannot do! You’ve got so-called “experts” that think by virtue of the fact that they have studied some books and passed some tests for a period of time, they know more about you or your child than YOU do, and they are fast and ready with the boxes to shove you into. Because they have the degrees behind them, they are somehow more knowledgeable?

I take all that with a fat dollop of salt – education is useful and it’s great and it’s NOT the end and the all. Academics are easy for me – doesn’t mean I know much (- I don’t). It would be easy for me to go and get more degrees – I do well on tests, I can sit down and get a score of 100% and walk out and remember absolutely nothing (- it’s actually happened).

Some people know a lot and they couple that with wisdom, curiousity, an open mind, with a belief system that honors the oneness of all people. And others just know a lot, but frame their knowing into rigid parameters of dogma, stereotypes, narrow vision and segregation.

Just because someone has a bunch of letters after their name does not make someone worth listening to.

These are the components that make life with Down syndrome, with deafness, with TBI, with pretty much any disability as far as I can see – really fricking hard. I mean, HARD. Like, crying-til-I-howl, HARD.

But it’s not disability itself.

In the right place and with the right people in my community, I don’t even notice most of my disabilities.

So the question becomes one of balance or what works for us as people, you know? Do we move our world because of our disabilities or do we move the disabilities for the world? Do we value what disability can bring to the human race, the unique perspectives, the different flavours, the push that disability brings to invention, access, beauty and new ways of thinking, doing, being? Or do we try and eradicate disabilities in favour of a beige world, one in which people are of one tone, one skill set, one way of doing things?

Do we see disability as an opportunity? Or as a lodestone?

And does it really need to be challenge?

*****

For more perspectives on this, and/or to add your own, please visit the Summer Series linked here.

 

Meriah
is a deaf blogger, global nomad, tech-junkie, cat-lover, Trekkie, Celto-Teutonic-peasant-handed mom of 3 (one with Down syndrome and one gifted 2E).
She likes her coffee black and hot.
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