“The Spirit of God has made me; the breath of the Almighty gives me life.” ~Job 33:4
Take the example of a television camera focused on Oprah. Studio lights shine on her, the camera is pointed at her, and some electrons leave the camera and go into equipment in the studio. From there they get jumbled around eventually some radio waves get involved, more electronics, a cable wire and into your television. The light from the television finds its way into your eyes, does stuff to the back of your eye, impulses fly through your optic nerve to your brain, and voila! You see Oprah.
Where is the image of Oprah? In your eyes? Do you see images in dreams when your eyes are closed? Is the image in your brain? On the television screen?
You’re walking down the street, minding your own business, and all of the sudden you fall into a large vat of super cooled nitrogen and every cell in your body freezes solid, instantly. No one notices you are missing for, oh, a couple of dozen years. Your frozen body is discovered and using technology of the day, you are instantly thawed. Do you continue with the same thought you were having when you fell in so many years ago?
Genesis 2:7 says “And the LORD God formed man of the dust of the ground, and breathed into his nostrils the breath of life; and man became a living soul.” So creation says we are just a mess of physical stuff, with a soul thrown in the mix.
I am in the midst of applying for disability benefits and supplemental security income for Pearlsky. Some of it is automated on the web, some had to be done during a scheduled phone call, and now there is the “Function Report – Adult.” One of the instructions is, in bold and all caps, “DO NOT LEAVE ANSWERS BLANK.” They already know she is legally blind, I sent them the state’s certificate of blindness. They know all her medications, diagnosis, doctor’s names, etc., but it looks like I have another form to complete.
This one was tough. I was going to post it, then decided not to, but will. I have told you that Pearlsky has no communication at all, no apparent fine or gross motor skills (but she does get her fingers into her mouth), and more. She has a major effect on people, a personality, and a soul. But reading this report, you see none of that.
Where is her personality? Her soul? Here is her report.
Reading, nodding, listening… and is it okay to say this? Reading her report I can’t help but think, it’s just not fair. You certainly continue to raise to the occasion. You are a role model to all.
I don’t know whether to laugh or cry. I guess I’ll do both. And that last empty section is just dying for a description of what a soul is, what a personality is —
I wondered a lot of things both during and after reading the report.
I wondered how many people would react to the fact that you had a few errors in grammatical structure or punctuation when it is something that you often call out in others? Will the ‘haters’ take advantage of a perceived vulnerability (even though anyone with half a brain (except my boy) would know that it is not really the same thing) like Bilbo told that dude to do with Smaug in The Hobbit?
I wondered how many people will react to the word ‘retarded’ and not say anything?
I wondered how many people will react to the word ‘retarded’ and say something?
I wondered if there will ever be a device that could change any of this for the two of you? Any kind of mechanism that would allow the two of you to communicate with each other? And if not, why?
I wondered why the government has so much waste in it, in huge, vast, enormous quantities, and yet nothing ever changes about that waste and now major cuts are being suggested that puts people like Pearlsky in even greater jeopardy of reduced care…and yet no one really seems to give a shit.
I wondered how do you actually define a soul? Is it through perception or through deed or something else? Is it through self-perception or through how others perceive you?
I wondered how in the name of hell do you cope after filling out a form like this? Even reading it was draining from a non-parental perspective. Filling it out and being her parent? I can’t imagine. What comes immediately after?
Look, it’s a standard form, everyone gets. We got one too for someone in our house. Yes it’s demoralizing to complete, but it’s the government. I promise unless you fill it out you won’t see a penny. It’s not personal. It’s just rules (as much as I know you LOVE rules…)
My Sarah also looks terrible “on paper”. Like she is nobody. Useless. But, that is not so. Yes, she cannot do one thing for herself except rub her nose, but in all honesty, it’s irrelevant to who she is. She is awesome! These agencies only look at capability or lack of. It speaks nothing about the person inside.
But these forms have to be filled out and now I do it with humor because the questions in regard to Sarah are laughable. And I try to picture the face of the person reading my responses 🙂
Your answers are short and to the point and honest. And they will never speak to the the sweet girl you have.
The best part will be when they deny her the first time. Not even kidding. Be prepared because it just may happen. I hate and love and depend very much on SSI. It sux.
The government is not interested in our souls (except on certain politically charged topics). If anything they regect the presence because it does not jive with bureaucracy. If they recognized the humanity of the people the screw over, they’d never retain staff or stay under quota. As long as Pearlsky is an Other, they can sleep at night.
When I read your blog and see the photos, I see a young woman who communicates through subtle body language, who loves swimming, music, Sponge Bob, and Political shows. I see somebody who is curious about new experiences such as meeting a snake and someone who draws comfort from her Dad when upset. I am entering my Master’s in special education this year and one of my research interests is finding ways to allow individuals like Pearlsky more control over their environments. I think you are a wondeful Dad who makes it possible for your daughter to live a happy life within her limitiations. I do think it sad that formal reports and testing often fail to see the person behind all those labels.