Visibility, accessibility, and judgy people

First of all, let’s get something straight: “invisible” and “physical” are NOT opposites.

A mental or psychiatric disability can be visible. For instance, when you see someone totally disheveled, walking down the street muttering to herself, you probably figure she’s got something going on mentally, like schizophrenia or a really, really, really bad day. A psychiatric disability can also have physical effects, like when you are so depressed you physically cannot get up to go to the bathroom, and brushing half of your hair feels like running a marathon; or the more extreme instance of catatonic depression.

Even more common is for a physical disability to be invisible. Examples: lupus, fibromyalgia, having a feeding tube and/or ostomy bag unless you are wearing a bikini, multiple sclerosis, cystic fibrosis, and many others. Some, though not all, of these impair mobility.

Often, the line between “physical” and “mental/developmental” disability is not at all clear (probably because our brains are part of our bodies? just a wild guess there). How would you categorize a traumatic brain injury? What about Tourette’s, which is neurological but causes physical movements? What about Down Syndrome, which is developmental but often accompanied by problems like heart defects and metabolic problems, and has distinctive (visible) physical features?

The line between “visible” and “invisible” is not clear either. The same disability may be visible at some times, invisible at others. And whether or not it is visible may depend on other people’s knowledge and perceptiveness. Does “visible” mean it must be automatically visible to every sighted person? Does “invisible” mean nobody can tell, even someone very familiar with disabilities?

My son Monkey has a disability, but most people don’t see that when they look at him. There are actually some visible signs: he wears SMOs, for instance, and you can see them over the tops of his shoes, but most people don’t notice or know that they are a form of brace. (Even higher braces – AFOs – are often covered by pants.) He wears an Alert Me band on his wrist with emergency information, but most people don’t register what it is; I’ve had another mom ask me if it was a watch. For that matter, when he wore oxygen full-time, somebody once asked me whether it was because he had allergies. (Yes, because that is a totally normal reason for a young child to be on oxygen ….???)

Basically, to many people, the only “visible” disability is when both your legs have been amputated and you’re being carried on a stretcher while not wearing prosthetics. Using a wheelchair is not enough, because if the person using it stands up a little bit to reach for something on a shelf, these folks will assume that the individual is just using the wheelchair out of laziness, or for attention, rather than because they need it.

Anyway, back to Monkey. He receives physical therapy at school. He has low muscle tone throughout his body, which means that he fatigues more easily than most kids. It also makes it much harder to lift and carry him; imagine trying to hoist a 43 lb bag of flour into a shopping cart. Now imagine that the 43 lb bag of flour has legs and you are trying to stuff those legs into the leg holes of the cart, and the bag of flour is not cooperating … a couple months ago I launched into some rather loud cursing in the checkout line at Target for this reason.

But why was I trying to put Monkey in the shopping cart in the checkout line? Because he was repeatedly attempting to elope. This whole shopping expedition, mind you, had not gone well; he was already dysregulated before we went; but there were some things I had to get. I usually tag-team with my husband, or we all go together on the weekend and I shop while he manages Monkey, but sometimes he works late or goes on business trips and I have to go to the store. This was one of those times.

Now, Monkey is a runner, which means he will suddenly break away from his adult and bolt – out of a building, into traffic. This is especially dangerous in parking lots. He was already attempting to run, so I knew that the only way I could get him through the parking lot along with the groceries without him bolting in front of a car was to have him seated in the cart. Which he is just about too big for, but technically he fits. It has never been easy to put him in these carts, but this particular day I just could. not. do. it. Physically couldn’t manage it. And I started cussing. I lost it. People were staring at me, probably thinking I was an abusive mother, and I don’t blame them.

I thought about this incident last week, when I learned about Caroline Carts. I thought about it again when I saw that our Target actually has one. If you don’t know what a Caroline Cart is, here you go.

The likelihood is pretty high that one of these days, I will end up using one of these carts for Monkey – not on a regular basis, but on expeditions like the one just described. But when I do, I can only hope that the nasty looks and comments are kept to a minimum. Because yes, my son can walk (and run). And no, he is not “visibly” disabled – unless you know what to look for. I dread a store employee or a vigilante coming up to me and telling me what a horrible person I am – the sort of thing that happens to people who don’t “look” disabled who park their cars (legally) in disabled spaces. Even more than that, I dread some mother of a child who is visibly disabled, challenging me. Because while I would be happy to turn over the cart to somebody who needed it more, I’m afraid she might think that I didn’t need it at all, that I was being callous, that I was utterly different from her. And I’m not.

We still use a Britax stroller (again, due to elopement and low muscle tone) even though Monkey is at the upper limit for height and weight. He gets tired and wants to be carried, and we simply can’t carry him any real distance; the stroller keeps him comfortable and safe.

Last Saturday, the three of us enjoyed a stroll around the mall, visited some shops, grabbed snacks and coffee. We got some looks and even a glare as Monkey climbed in and out of his stroller, as we pushed him around. I’m glad that “Too Big for a Stroller” tumblr thing isn’t still going, because someone probably would have snapped a picture of us. Dear people at the mall, my child is not lazy. He’s not spoiled. He is big for his age and has disabilities.

I’ve been unable to get into a building because Monkey was in his stroller and I couldn’t find a wheelchair ramp. I put him in the adaptive swings at the park; they are the only way he is able to swing. If no family bathroom is available, I change him in the accessible stall in a public bathroom, because I need the space. At home, he has adaptive equipment to help him use the toilet.

Physical accessibility matters for us. It affects our daily lives.

But you probably can’t see that.

Please don’t judge.

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