He'll never walk or talk.

[teyrnon]

Over the last couple of the years off and on it I've thought about writing an essay about my particular handicap. The trouble is I don't really know where to begin and what really needs to be said. What I want to do tonight is gather a few of my thoughts together. I'll be putting it under a cut for two reasons one is that this subject matter may be uncomfortable for some and the other is that this might get a little long.


When I was younger I never really thought much about the fact I have cerebral palsy. I could do just about anything I set out to do. Sure, there were kids and adults alike who always had to make a point of it. Most of my friends never really brought it up or treated me strangely for it. There were lots of people who never saw past the CP and they by and large behaved as though I didn't exist at all. I still run into the latter from time to time, it's a nuisance. I've discovered that adults can be much more moronic about it than any of the kids I encountered in my childhood, However, I digress.

I was also never really encouraged to ponder the CP much. I was physically active and generally capable. More so than some of my "able bodied" peers seemed to be at times. I ran, I played, I did all the things the other kids did. Then again I was never really keen on team sports aka ball games but then neither were my brothers. The fact that both my brothers grew up to have degrees in electrical engineering probably goes a ways in explaining that.

Lately, I've been trying to put together a few of the pieces I have about the CP and how it did affect my childhood. Many people with CP will tell you the cause of their CP. A guy I knew in High School had CP that resulted from Rh incompatibility. In my case no one really knows for sure. My mother could never get an answer to that question. The doctor who presided over my birth "lost the file" a week or so after I was born. I had a severe case of neonatal jaundice from what I can glean from memories of clues my mother gave me over the years and talking with my brothers recently. The doctor for some reason decided to do nothing to treat it. As I said before, when my mother went in for a follow up, the files had been lost. Rather suspicious, no? My mother also mentioned I had a number of seizures when I was an infant. These may have resulted from the jaundice or had another cause. Thankfully, I've never had a seizure since I was an infant.

I'm given to understand that my mother never really got much help from the various doctors she consulted. They all gave the same bleak prognosis that I'd never walk or talk. The brain damage was too severe to expect me to be much more than a vegetable. Thinking about it now, this may have been the period where my mother developed her general distaste for and ambivalence about doctors. Thankfully my mother didn't accept that prognosis. I don't have memories of that period. and I'm not sure what methods she might have used. I do know that my thick neck muscles developed because of whatever strategy she used to get me to hold my head up. She also mentioned dragging me with ropes to get me to first crawl and eventually to walk. I've encountered a few people who had a similar prognosis the doctors gave for me and I suspect she had an quite an uphill battle. I can't help but wonder whether or not the people with spastic quadriplegia I've encountered in my life could have developed as far as I did if they'd had someone as stubborn, bloody minded, and determined as my mother.It's a sobering thought that had the doctors been right I could have been one of them.

I'm going to stop here. I need to research this further. There's one more person living I can consult about this who might know more. If my mother confided in anyone it would have been her sister; my aunt.

Comments

[turdburgler.livejournal.com]

I've discovered that adults can be much more moronic about it than any of the kids I encountered in my childhood

As a person without any kind of chronic medical problems, I find that I just don't know how to react with people who obviously do have some, simply because I do not know what type of behavior is liable to make them feel unhappy or angry or just generally bad about it. In that respect, I would prefer not to add any more grief to their lives.

My personal preference, if the world was a perfect place and people didn't get offended at the drop of a hat, would be to ask bajillion questions about it. But I feel like most times this would only serve to annoy the person. But what do I know? To me it seems safer to assume they don't want to be bothered than to risk irritating them by peppering them with nosy questions.

The thing I am most curious about is, what is your preference? Do you prefer strangers to come up and ask your condition is? Or do you prefer that they ignore you and not bother you about it? Do you prefer strangers offer to help you out or do you prefer they let you try to do whatever it is by yourself? Do you think your views on this reflect that of most people in your position?

[cybermystic.livejournal.com]

Let me begin by answering the last question first. I'm in no way qualified to speak for anyone but myself. I haven't really interacted with too many people with similar conditions since High School. I avoided getting involved with special services at any of the colleges I attended, after dealing with the one at DCC for a couple years, because I didn't want to put up with the drama that too often goes on in those organizations anymore.

Do you prefer strangers to come up and ask your condition is?

I don't mind questions. Well, not politely posed questions. I didn't think too much of the guy who once ran up to me on the street and shouted in my face, "Why do you walk like that? What the **** is wrong with you? Are you brain damaged?!"

It really depends though, if I'm not busy and have time to talk I'm always more than happy to talk to anyone who wants to talk. Usually when people approach me it's because they already know someone with CP, a nephew, niece, or the child of friend, or less often, their son or daughter. Those conversations usually involve answering a few questions and listening to them talk about their own experiences.

Or do you prefer that they ignore you and not bother you about it?

There are several ways to read this question and I'm not sure which you mean. As someone who has been shunned or ostracized for what is pretty well a physical trait I can say I don't like it very much. Seeing people stare at me and then pointedly pretend I don't exist is not fun. I doubt you'd find many if any who think it is.

Do you prefer strangers offer to help you out or do you prefer they let you try to do whatever it is by yourself?

It depends on the situation. I usually don't mind an offer but most of the time I'm going to turn it down. All too often well-meaning people trying to help tend to cause more hassle than they solve.

On the other hand I'm reminded of an occasion a few years ago when I was coming out of my bank when I saw a young woman with what appeared to be moderately severe CP on a mobility struggling a couple doors down struggling to open the door while juggling the controls of the scooter. I went over to get the door for her. She proceeded to chew me out. She could get the door herself thank you very much. I smiled, held the door open, and she went in ranting all the while. I shrugged it off and went on my way.

[turdburgler.livejournal.com]

There are several ways to read this question and I'm not sure which you mean.

I tend to ignore people whom I feel uncomfortable around. As in, I try to avoid being near them, don't initiate conversation with them, and depending on how ... scary ... they look, I may not even interact with them if they engage me in conversation. That's usually reserved for ne'r do wells on campus though, 'cause we seem to have a lot of muggings/thefts/etc which I do not want to be a part of. But I think for me this also applies to a lesser degree to people who have something obvious physical handicap.

I am not the most socially graceful person in the world, and I tend to be straightforward and blunt about things when I do open my mouth. And I know this tends to offend people, especially people who are overly-sensitive. Since I have no real experience with randomly interacting with people who have an obvious physical handicap, I usually tend to err on the side of keeping my mouth shut, and to ensure that I do that, I tend to avoid folks like that on the street if at all possible.

I guess you could say that I am intensely curious about things like this, since my life has been pretty normal and uneventful. I would want to know all about it and want to ask all sorts of questions, and I don't know if people would appreciate the curiosity or be irritated about me, a stranger, coming up and asking about something so personal. People excuse children for this type of behavior, but not adults usually. And heck, I don't even like making BS conversation with people I see every day at work, and I sure as heck wouldn't want them asking me personal questions. :)

I'm not really sure where I was going with this, but there you have it (whatever it is). :o

[cybermystic.livejournal.com]

Well, avoiding trouble and danger is a reasonable motivation. I tend to stay clear of scary people myself. Although appearances are problematic in that regard. The really dangerous (and decidedly unhinged) people I've encountered over the years were well dressed and well groomed. (By way of example, Sdaemon might remember the religious nut who attacked me in a MARTA Station in 1994. That guy was a fancy dresser and judging by his statements in court he put a lot of store in clothes.) Okay, I digress.

Well, it would be a little strange to just walk up to a total stranger in a public setting and start asking all sorts of questions. People don't normally just do that kind or thing. In a social gathering or similar occasion that sort of thing might be more acceptable. Typically when someone starts asking me questions about my obvious traits it's someone sitting next to me on a train or bus or even in a coffee house or diner. And typically its always someone who already knows a little something about CP.

The more amusing but often just annoying encounters are with truly clueless people who assume I'm drunk or something.

I understand what you say about personal questions. I don't really consider questions about CP to be all that personal. It's something that's readily obvious to anyone who meets me and not something I can hide. Now if someone started asking questions about something like how a disability affects sexuality; that I'd find entirely too personal.

[call-me-lovey.livejournal.com]

Hiya,

Do you prefer strangers to come up and ask your condition is?
I hope most people wouldn’t do that. If somebody wants to know, I’ll tell them. People have even asked me how I manage to go to the toilet (that was in middle school, when they should’ve known better.) In my experience, when people ask questions like that, they don’t really want to know let alone learn anything; they want to see your reaction.

Or do you prefer that they ignore you and not bother you about it?
I’m happy to tell people *something.* I’m sure they don’t want to hear *all* the details of it, so I’ll tell them what they want to know, nothing more.

Do you prefer strangers offer to help you out or do you prefer they let you try to do whatever it is by yourself?
I can’t even pick something up in a shop without *someone* asking, “Do you need help?” If I’m with a carer [which I usually am] they’ll help me with whatever it is I need (if they’re any good, that is!) so I don’t usually have that problem. If I get cross with the person offering help, what I want or need to do won’t get done, & I’ll look like an idiot.

Even people who *know* what they’re doing can have an off day & do everything wrong. People have assumed I *can* do something I *can’t* & left me alone to do it, or that I *can’t* do something I *can* & they’ve done it for me, either because they don’t know, or because it’s easier to do it for me than watch me struggle.
As for other things I might need help with, like money, bank statements, etc. I’d have to know someone really* well to feel comfortable with them helping me with that.