What’s It Like?

Another post today about living with disabilities reminded me of a question somebody asked me last night:  What’s it like to live with a blind husband and all these blind children?

First off, the connection with the article:  We see a lot of this attitude around our family’s blindness. People think blindness has to be all-or-nothing, not realizing that “high partials” like my husband and children are still disabled, still can’t drive or perform many jobs, still have to use a cane to get around safely, still have to use adaptations of all sorts in order to function.  I’ve said before that sometimes it seems like it is simpler to deal with being totally blind, because there are fewer choices and decisions to make.  (This is not saying it’s easier to be totally blind than partial, just that it’s easier to select the appropriate accommodations.)  You need a cane that you’ll be tapping, you qualify for a guide dog, you read braille and use audio.  For partials, there are so many shades of gray and so many decisions to make.  Can he read print? Does he need braille as well?  How about a CCTV for reading regular print?  Does he qualify for a guide dog (i.e., is he blind enough)? Does he need a cane to walk normally?  What cane technique, tapping or constant contact, cross body or swinging?  Which school materials should be made large print, which should be brailled, which can be used in audio format, considering that braille and print text are processed differently by the brain than audio?  Can he see colors? Can some functional improvement be achieved through exercises?

All of that is just not on people’s radar.  You’re either blind or you’re not.  So I can tell my son’s cheer coach that he’s legally blind, and yet because he looks and acts like a normal kid she puts him on the back row where he can’t see what the assistant coaches are doing in the front. We get harassed for using the handicapped parking even though my family might not be able to make it safely from the store to the car if we were farther out.

But really, that’s neither here nor there.  What’s it like living with blind people?  I don’t know.  What’s it like not living with blind people?  I don’t have much for comparison.  I’ve been with Brian since I was 15 years old.  It’s like asking Brian if he sees things blurry.  He’ll say no, of course not, my vision is perfectly clear and always has been.  He has no point of reference for “blurry” because his eyes have never worked the way yours and mine do.  I can guess by taking my incredibly strong glasses off, but it’s not the same.  You could come over here and try to do my job for a while, but you know you’ll get to go home soon.  It’s not the same.

I don’t know what it’s like to only have one child, either.  I went straight from zero to three, with all the difficulty that comes of having three babies at once.  It’s not like running a daycare, because they don’t go away at night.  It’s not like having twins, because you don’t have enough arms, enough boobs, enough parents to go around.  It’s not like having children close together, because they’re all teething at the same time, weaning together, learning to walk together, learning to climb out of bed in the middle of the night together, there’s a huge difference between 30 seconds apart and 9-10 months apart.  Part of the reason we had more kids was because I wanted that experience of having a baby, except I still didn’t get it.  I got to have a baby while having more kids who were older and still needed attention.

What’s it like around here?  I’m the only driver for eight people, including the other adult who works and supports our family financially.  I’m the only one who goes to all the doctor’s appointments, the one who is responsible for taking notes and remembering all the things doctors A and B said so I can tell them to doctor C and therapists D and E, because I can’t get ABCDE to sit down at a table together, ever.  I’m the one learning braille and cane technique in more detail than I ever needed as a mere wife, so that I can be the one responsible for making sure all my kids grow up to be productive, independent adults.  Nobody else is going to do that for me.  I can’t trust the government to do it for me.  I’m the only adult who can see all the dust bunnies in the corners and the flies flying around that keep returning and the mold in the shower stall and on the windows and how warped the boards in our porch are getting and all the weeds in the yard.  What people don’t see or notice, they don’t tend to care about.

It’s fucking hard, that’s what it’s like.  But you know what? I’d probably be bored anywhere else.  I’d hate working in an office, working a high-paying job just because of the prestige or money.  I’d hate hanging out with the frat people I drive around in my car on the weekends.  They’re not my people.  My people are right here around me, disabled, magickal, hippie, alternative, everything not mainstream, not normal.  That’s what my life is.  My life is not normal.  Sure, it could be easier, and I’m always looking for ways to improve.  But I like my life this way.

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About solinox

I am a Wiccan priestess, a libertarian mother of triplets plus three, a wife and homeschooling mom to blind and autistic children, a fiber artist, and a Jane of All Trades, always learning and seeking to help.

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