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Post by MarineAmp on Jan 4, 2011 21:10:12 GMT -5
I figured I'd create a new thread, with nothing in particular to be discussed besides what is on my mind or whoever else wants to contribute at the time. Seeing how most threads go off topic anyways this seems like nothing really all that new. Actually that is kind of the point as to why I am doing this, so many things go off topic and I feel like there is nothing more I can contribute to a thread when that happens.
What's been on my mind the last couple of days has been the difference between congenital and non-congenital disabled people. Not sure if that is the proper way to say it, but I'm sure you get the point. Obviously anyone is more than welcome to contribute.
I don't have a ton of experience with people that have had their disability from birth or even a very young age. However I do have some and what I notice in some (not all) is how socially awkward and sheltered this group can be.
I recently helped coach a summer sports program for disabled kids ranging from the age of 8 to 21. I was one of two coaches in charge of the older, more able bodied group. I had boys and girls from the age of 15-21, and it shocked me to hear what the actual age of some of these kids were after I had gotten to know them. At first they all seemed to act around the age of 15, but I later found out some of them were in fact 21 and in their last year of eligibility for the camp. All of them were great kids, but I was surprised how extremely sheltered some appeared to be.
My wife likes to watch medical shows that have unusual conditions, and just about every time it is featuring a kid, the parents are there doing everything for the individual when I think they should be trying to get the kid to be more self-sufficient. Which is what I think happened to a lot of these kids I worked with.
This obviously isn't the case for every kid that has a congenital disability, because I've met paralympians and I've heard of plenty of other success stories.
I just think it is a shame that a kid who is born with or acquired a disability at a young age, aren't taught to be independent if they are physically and mentally able to do so. Sure it is most likely going to be tougher to accomplish than an able bodied child, but I believe it would definitely be for the best interest of the kid.
I have a cousin with CP, that wasn't really sheltered in that she never got out of the house, but sheltered in that she never did anything on her own. She's about 5 years younger than me, gets around mostly in manual wheelchair, but she's able to walk if it is convenient for her. To this day, she still doesn't have her driver's license, not because of ability, but being scared of something new that she has to do on her own. She also has an assistant that lives with her to do daily household stuff and help her run errands.
Before my injury I just figured this is how it is for the life of a disabled person, but after my injury I couldn't wait to finally be living on my own, cooking my own meals again, just being independent. Sure I needed help with some stuff, but I was eager to learn how to do a lot of this on my own. I think this drive for independence was never taught to some of these kids and they are living and going to live less fulfilling lives because of it.
This is just my opinion, and not intended to upset anyone. I'm curious to hear for the congenital guys in this group about how your parents raised you and if this was an issue for you or others that you know.
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Post by devogirl on Jan 5, 2011 0:53:09 GMT -5
I have seen this a lot, and it makes me sad/angry, although as someone just watching from the sidelines I feel I don't have a right to judge anyone. However, since we're among friends here, I'll just say, that two of the most disastrous dates I have been on were with with guys with congenital disabilities who had extremely underdeveloped social skills even in their 30s and 40s. They were like little kids playing at being adults; they dressed and acted like they were in their 60s but when it came to sexual relationships, they were like 14 year olds. They complained about missing out on dating as teens and never being able to catch up, but I think the parents are a big part of the problem. It doesn't have to be that way! I have met many guys with congenital disabilities who are not like that at all, some on this board.
What's even worse than overprotective parents are when the parents try to deny the disability by avoiding adaptations that would really help, because they want to avoid the stigma. I have met two people (in very different circumstances) who were born deaf and whose parents insisted they speak and lip-read only, no sign language. It seemed to me they were way more isolated than if they had just learned ASL. I know, it's a controversial issue and there are valid arguments on both sides, and like I said, I feel I don't have the right to judge what some parents decide.
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Post by E on Jan 5, 2011 2:01:56 GMT -5
I think I'm very blessed in the parenting department. They're independent people themselves, and raised me very much that way. I'm often very ignorant regarding disability topics, adaptations, etc. because my handicap has never been the focus of my life.
I can safely say I lack the social retardation often associated with being a crip for life. It is a common thing, though, and it is a shame.
Parents can't be blamed 100%, either. People do have some responsibility for themselves. I chose to leave home at 18, despite parental trepidation and warnings. I leapt out rather blindly, actually, deciding I'd just... figure it out. Which I did. Eventually.
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Post by brace4impact on Jan 5, 2011 6:31:38 GMT -5
As someone born with a disability, I can completely relate and agree to this. However, both as a result of parenting and of my own accord, I try to be as independent as possible. As for romantically, that's a different story, but in terms of living, I don't want to end up like some of the kids I grew up with, so I try to be as self sufficient as possible. A lot can be said about parenting, but even that can be overcome if one is willing to take the risks upon him or herself.
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Post by MarineAmp on Jan 5, 2011 13:06:42 GMT -5
In response to devogirl, I don't look at it as judging parents. I don't assume that parents are trying to do this to hinder their child. It just seems like that don't know any better, and in their own eyes they probably think they are protecting their child from the outside world. Or maybe it is just their life style.
I watch this show called wife swap now and then. I remember this one family that was on the show, and they liked to live as if they were in medieval time period. But they lived in a regular looking subdivision, and the dad had a regular 9-5 job to support this fantasy lifestyle. They had two kids a boy and girl ages 16 and 14 I would guess. Long story short, the new wife that came in made them become more social and put them in public school and the girl made a friend and the new wife had gotten the girl a cell phone because she was excited to have made her first friend. When she went to call her new friend she not only didn't know how to use the phone, but left a message that sounded like a 5 year old was telling her what to say.
Her father saw this conversation and as much as he wanted to deny that his children were fine, there was no way to defend his past actions and he saw that he couldn't shelter his kids the way he had previously.
This sheltering can happen to any kid growing up, and yes the parents aren't totally to blame, because the individual can take it upon themselves to overcome this, but when it's been ingrained since birth it makes it difficult.
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Post by wheelieInCali on Jan 6, 2011 8:58:06 GMT -5
I think we are born completely socially ignorant. Even if we see society functioning around us, deciphering how we fit in and how we are viewed by others is totally manipulated by our home life and upbringing no matter how independent we want to be in our early years. I made a few friends at school after my accident who were both born with their disabilities and both lived with their parents in a little box provided for them by society. I shattered the walls of their boxes, pointing out how society was patronizing them and they were just grinning like dumb kids. The one 19 year old guy got his feelings hurt and his mom came to my house to talk to me even though she loved how I had been influencing him. The 22 year old girl and I had a few fights but she figured it out and thanked me years later for it.
It's not just parents, it's society in general. The disabled, especially wheelers, are supposed to act a certain way, allow for special treatment, and not make the normal people feel guilty about their indifference or not needed in their compulsion to help. I think many people born with their disability have had their personality molded to fit into these expectations by society. People who are disabled after they have already assimilated into society often find it difficult and depressing to get into this box or if they are like me, get a kick out of scaring the sheep.
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Post by MarineAmp on Jan 26, 2011 23:55:31 GMT -5
Another topic:
I'm just curious how many devotees have picked their place to live because it was also wheelchair accessible. I'm not talking about having a roll in shower or anything crazy, but having no steps, or at the most one step in/out of where you live. Having wide enough doorways to go through and be able to enter the bathroom. Just simple stuff like that. I'm guessing some of the more experienced devs that have been with a disabled man might have taken this into account, but maybe I'm wrong. Anyways....I'm curious to hear the results to this.
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Post by msademarro on Feb 3, 2011 19:21:16 GMT -5
Another topic: I'm just curious how many devotees have picked their place to live because it was also wheelchair accessible. I'm not talking about having a roll in shower or anything crazy, but having no steps, or at the most one step in/out of where you live. Having wide enough doorways to go through and be able to enter the bathroom. Just simple stuff like that. I'm guessing some of the more experienced devs that have been with a disabled man might have taken this into account, but maybe I'm wrong. Anyways....I'm curious to hear the results to this. Unfortunately, do the area where I live (a few miles outside of a large city with a rather high crime rate), I chose my apartment on the second floor for safety reasons - being a single young woman I wanted only 1 entry point to my home. I hate being limited on who I can and cannot invite over. My lease is up in December and I'll be moving to a smaller suburb closer to my office. Then I'll be looking for either a first floor apartment or a building with an elevator.
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Post by ~Z28gal~ on Feb 3, 2011 20:37:12 GMT -5
I recently moved (from a fourth floor apartment, no elevator!) and while I was apartment hunting, I wasn't consciously looking for an accessible place. I'm pretty sure I was unconsciously thinking about it though, because I ended up in a "workable" place. When I move again, I'll be looking for a ferret and wheeler friendly place! No more stairs for this dev.
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Post by wheelieInCali on Feb 4, 2011 14:13:00 GMT -5
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Post by ~Z28gal~ on Feb 4, 2011 22:45:50 GMT -5
Big give away: if you read through the link, it says this is a "concept" - so yeah, def beta!
That's a very cool design, but the engineer in me sees a few issues. First of all, where's the footplate??? Am I missing it? Also, it seems like it's pretty low slung.
Maybe in a few years...
Lol wheelie, you're more likely to need off road tires around here, at least this time of year!
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Post by MarineAmp on Feb 5, 2011 15:00:36 GMT -5
It certainly looks cool, but unless it is operated electronically I don't see anyone pushing it, and I don't see anyone with legs sitting in it either. I think it would be cool if it could go up stairs, but I don't see anyone pushing any type of wheelchair up stairs unless there is some kind of assist device besides just changing the shape of the tire. Transferring to and from this thing looks like a pain also. It would surprise me if an actual wheelchair user came up with this concept.
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pjdukegavin
Full Member
banned
Posts: 136
Gender: Male
Dev Status: Pretender
Relationship Status: Married/Domestic partnership
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Post by pjdukegavin on Feb 6, 2011 8:55:09 GMT -5
Marine: I was talking with a friend the other day about the changes since my injury. There weren't many amputees my age to look to for support, advice, coaching. The people I was introduced to were older, mostly victims of diabetes/circulation issues. The wars, and all of you guys coming back from them, have made a difference for the rest of us as there's been a jump start to research and development (C-legs are now available, and somewhat affordable, for example). Trauma's never easy to recover from, but I think you guys have the advantage of having peers in age, experience, circumstance, and outlook that a congenital or even a civilian wouldn't have.
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Post by MarineAmp on Feb 9, 2011 4:03:15 GMT -5
Marine: I was talking with a friend the other day about the changes since my injury. There weren't many amputees my age to look to for support, advice, coaching. The people I was introduced to were older, mostly victims of diabetes/circulation issues. The wars, and all of you guys coming back from them, have made a difference for the rest of us as there's been a jump start to research and development (C-legs are now available, and somewhat affordable, for example). Trauma's never easy to recover from, but I think you guys have the advantage of having peers in age, experience, circumstance, and outlook that a congenital or even a civilian wouldn't have. I wish I could say that what I experienced through my rehab was the same for everyone, but I have to agree with you completely. I was injured with 6 other people, 3 are DAK (4 if you count myself), 1 is a SAK, 1 was a burn victim (looks like he has permanent sun tan now) and one died. I haven't seen the burn victim since the injury except for on facebook, but it was huge benefit going through rehab with guys I that I served with. Even though we were injured at the same time, I still had them to help guide me along. This because I spent the first 2 months in ICU, when the rest of the guys spent anywhere from 6 hours to 6 days at the longest. Then I had to also deal with muscle atrophy. Plus there were already guys way ahead of us that all of us could turn towards for guidance. I have done quite a few interviews since my injury and every now and then I get asked about the quality of service I received. I always answered that question saying that I would much rather have gone through this whole event while being in the military vs. being a civilian, unless you're a multi-millionaire. Money was never an issue during my recovery. Prosthetic work I can't say the same for, but it has the appearance of money not being an issue. I think the biggest difference is the support system. The military flew my parents, grandparents, and my brothers out to see me. They put my parents up in lodging for about 3 months. Plus there are so many organizations out there designed for disabled veterans. Although no amount of money could have ever been enough for me to willingly amputate my legs, my retirement pay isn't a huge sum of money, but it is plenty to live off of, and having free medical care for the rest of my life is pretty nice. Plus other benefits that my wife is able to use and future kids will also be able to use. I don't know the background of your injury, but you if you were injured while on active duty then you should also have these benefits. I do feel very fortunate to have had all the support that I received and continue to receive. Who I am really grateful for is all the veterans who went before me and fought for the benefits that I now have.
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Post by Emma on Feb 13, 2011 2:55:06 GMT -5
I figured I'd create a new thread, with nothing in particular to be discussed besides what is on my mind or whoever else wants to contribute at the time. Seeing how most threads go off topic anyways this seems like nothing really all that new. Actually that is kind of the point as to why I am doing this, so many things go off topic and I feel like there is nothing more I can contribute to a thread when that happens. What's been on my mind the last couple of days has been the difference between congenital and non-congenital disabled people. Not sure if that is the proper way to say it, but I'm sure you get the point. Obviously anyone is more than welcome to contribute. I don't have a ton of experience with people that have had their disability from birth or even a very young age. However I do have some and what I notice in some (not all) is how socially awkward and sheltered this group can be. I recently helped coach a summer sports program for disabled kids ranging from the age of 8 to 21. I was one of two coaches in charge of the older, more able bodied group. I had boys and girls from the age of 15-21, and it shocked me to hear what the actual age of some of these kids were after I had gotten to know them. At first they all seemed to act around the age of 15, but I later found out some of them were in fact 21 and in their last year of eligibility for the camp. All of them were great kids, but I was surprised how extremely sheltered some appeared to be. My wife likes to watch medical shows that have unusual conditions, and just about every time it is featuring a kid, the parents are there doing everything for the individual when I think they should be trying to get the kid to be more self-sufficient. Which is what I think happened to a lot of these kids I worked with. This obviously isn't the case for every kid that has a congenital disability, because I've met paralympians and I've heard of plenty of other success stories. I just think it is a shame that a kid who is born with or acquired a disability at a young age, aren't taught to be independent if they are physically and mentally able to do so. Sure it is most likely going to be tougher to accomplish than an able bodied child, but I believe it would definitely be for the best interest of the kid. I have a cousin with CP, that wasn't really sheltered in that she never got out of the house, but sheltered in that she never did anything on her own. She's about 5 years younger than me, gets around mostly in manual wheelchair, but she's able to walk if it is convenient for her. To this day, she still doesn't have her driver's license, not because of ability, but being scared of something new that she has to do on her own. She also has an assistant that lives with her to do daily household stuff and help her run errands. Before my injury I just figured this is how it is for the life of a disabled person, but after my injury I couldn't wait to finally be living on my own, cooking my own meals again, just being independent. Sure I needed help with some stuff, but I was eager to learn how to do a lot of this on my own. I think this drive for independence was never taught to some of these kids and they are living and going to live less fulfilling lives because of it. This is just my opinion, and not intended to upset anyone. I'm curious to hear for the congenital guys in this group about how your parents raised you and if this was an issue for you or others that you know. I guess I'll share my thoughts about most congenitally disabled people or people disabled at a young age. I dated a guy with CP that mostly involved his legs, he used a manual wheelchair. He had pretty good use of his arms and fingers but needed help with cutting food and had sloppy handwriting. I met him just as he turned 21 years old. He had already gotten a 2 year degree at a community college and lived at home throughout college and afterwards. When I met him he was doing nothing with his time other than working on writing a screenplay and living off his govt. social security benefits. He also did not drive nor use public transportation and relied on family or friends to get places but really didn't go many places. While I was attracted to him physically and his personality I was NOT attracted to the way he lived his life. We dated a few months. I got sick of visiting him at his parents house and driving him around. I knew he was capable of MUCH more. After we broke up I told him about my frustrations and he has since worked to get a degree and (I think) a job but he still lives with his parents and does not drive. He is now 28 years old, engaged to be married but hasn't bought a ring. I think he is a perfect example of a typical person born with their disability. Am I wrong? E, I know that's not the life you live but what about other guys here? How have you worked to not be that guy? What about other devs have you had similar experiences? I am SO happy I did not give up on disabled guys after him.
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