“You need a whole community to raise a child. I have raised two children, alone.” ~Toni Morrison

I just read this touching post over at UnlockTheSecretVoice, it is entitled “Community.” And, yes, SingleDad has an opinion, glad you asked.

Claire, she no more of Life With A Severely Disabled Child, (and we know why she needed to bail on that blog; are all men morons?) wrote, in part, in a comment on that post:

As for “size” and “accessibility”…there are many people (think about those poor boys coming back from the war) who become disabled as adults and the world becomes inaccessible to them. So, we fix children’s bodies so they supposedly can access more activities, but ignore the rest of the disabled population because they are adult size. See … a social problem, not a problem with our kids. In any case, any place that can accommodate a stroller, can accommodate a wheelchair.

As we know, Claire is voraciously anti growth attenuation (see here) as is someone we all know and love but stays anonymous on his other blog, here, as well.

But, saying any place that can accommodate a stroller can accommodate a wheelchair does not meet the point of that post. If anything, advocating growth attenuation does! And before you go all ape-shit on me, I absolutely consider it immoral mutilation.

Things conspire to stop me from doing even simple things with Pearlsky such as going to see her grandmother, about three hours away. Between my physical limitations (my back) and Pearlsky’s size, without a lift or two healthy adults at grandma’s, a trip is impossible. Simply toileting her is not possible. A disabled adult who is higher functioning mentally and physically (minimally able to help him/her self when getting out of the wheelchair) would have no issue. Pearlsky simply is “dead weight” … a huge difference.

I recently had two trips, one to a beautiful island to help with a dying woman and one business trip to a fun city in the States. Either one would have been fantastic for a “mentally typical” (screw it, “normal”) 19-year-old woman in a wheelchair. She, and I, would have been able to do many things and have a great time. We would have brought along a female (aide? partner? high priced call girl?) to help, if for no other reason than respecting some messed up social norms (a father just can’t see his disabled daughter in a state of dressing or whatever). A rental wheelchair van, accessible hotel, and a great diversion, a normal diversion.

But what would Pearlsky get out of it? Even if flying were not too difficult (I still don’t have the guts to try it) and we brought an aide … would it be worth it? And I would need two aides (ok, one aide, one Craigslist special) to make the logistics work.

Now, if Pearlsky were smaller, and she is only 88 lbs (40 kg), maybe I alone could get her in and out of her chair to solve a bit of the problems.

Accessibility is barely half the issue with children like ours. Many situations frighten or upset our kids. Why don’t we do more with them? Because they are loud and because they get upset, distressed, tired, cranky, they seize and gesture, and the like. We don’t take babies to many places for the exact same reasons, but an infant can be picked up and comforted and nursed. Or hidden in a sling. Or picked up and removed trivially.

If Pearlsky were the size of a small child, we could travel. We could see Grandma. How much did she miss by not being with me on the recent trips? How much worse it would be to take her anywhere, though, because I’m pretty sure she would have a hard time.

David lives in a residence that is so far away from anything that it makes you wonder about where I could take him for a few hours if I wanted to take him some where. Walmart? I guess I could bring him home for weekends if I really wanted to, but at this point, it would be hard on him, and me. Plus it’s too far away, two hours or more. My home is accessible but that doesn’t make it emotionally and mentally accessible.

We don’t need just physical accessibility. Nowadays there is a lot of that. But when was the last time you saw an adult changing table anywhere other than my house? Even “family bathrooms” (and I just learned what they are) may have infant changing tables, useless to us. Where is there a quiet place, if needed, anywhere for the disabled? Pearlsky loves IKEA and Home Depot and the symphony, but sometimes it becomes a bit much. How fast can we get back to our van? There is no other place to escape to. If I could just pick her up …

We need either mental accessibility, growth attenuation, or … what we have now.

I got yelled at today. I am having a small “dinner party” in a couple of days and was inviting a very dear friend and her husband. She said “yes” and asked how many people were going to be there so far. I said “so far, with you, three.”

Then she gave me a rash of shit.

What about Pearlsky?

The truth is that Pearlsky would be right near us, probably watching TV in the same room … maybe at the table for a bit, but I did not count her.

Lazy? Indefensible? No, just something else she will yell at me about in heaven …


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