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Post by thegoodlife on Feb 13, 2011 4:06:12 GMT -5
As a person with a congenital disability, I certainly live my life very different from other people. I have a different mode of performance than others and different way of doing things or getting things done than everyone else. However, I don’t think I am particularly childlike and there are a few reasons I think that is. First, I have a degenerative muscle disorder and therefore lived a large portion of my life out of a wheelchair and could “pass” as non-disabled for a significant part of my life. I used to just walk with a slight limp. So, although I was born with a congenital disability, I could keep it from people and therefore had the opportunity to be more social than others. Second, I had three other siblings, and therefore my parents went through great lengths to try to give me no special treatment above my brother and sisters. I had a job when I was fourteen, and had to get a job as soon as I graduated (otherwise I would be out on the streets). My relationship with my bros and sisters was somewhat normal; I wrestled with them and got all of the scrapes and bruises other children normally have. I do live at home now, now that I am in school, and may remain there through graduate school. Why? Living alone, while doing graduate work and while holding a job would definitely exasperate my condition and burn me out. Since my disability has gotten worse I now need assistance for some tasks like standing up, and walking down the stairs since my house is not accessible and my dad makes too much money to qualify for assistance. In addition I might need someone to go shopping for food for me, as I find it difficult to wheel and hold a shopping basket at the same time. I take the handi-bus to school every day, but occasionally I do accept rides from my parents; when my tired muscles can’t bear the one hour (two if counted both ways) ride on the rough and bumpy handi-bus.
When I was walking I had the opportunity to work with persons with disabilities more severe than mine, including congenital disabilities. Some did lack the normal social skills that I had, and others around me had; but the reason for that is simply social exclusion to a massive degree (social exclusion that I am now experiencing and let me tell you it’s not easy). Throughout their lives they were segregated from other children to go to special education, and so they can be with someone who might be able to assist them. As a result of being in special education, they were stigmatized in high school. Kids wouldn’t invite the “special kids” to their house after school, they never had the opportunity to play with other youth in high school. In truth, I regrettably was one of the persons who tried to stay away from them as I did not want to be classified in that way. When social interactions happened they were treated as strange and unusual, probably not touched like a friend, nor hugged. Now, considering that these persons with severe congenital disabilities were socially rejected to various degrees, parents might have coddled their children more and tried to protect them from a world that rejects them. I don’t really blame them, but it probably contributed to them being socially awkward. If I was a parent it would be very difficult for me not to try to comfort my child in this way too, I think.
Nowadays, I am counted as severely disabled. I can’t drive because of my exasperated conditionI am treated extremely different from everyone else because my disability is visibly quite different, my limbs are skinnier, I have some contractures and I move with a noted stiffness. I am shyer than a lot of people, because I have been treated so differently for so long. Once I graduate from grad school, I’ll probably get my PHD and teach at the same time. It is a little strange, I suppose, to be living with my parents still, and I suppose many girls wouldn’t even consider me because of that, or because I didn’t have a car, but these are girls I wouldn’t want to really get involved with anyways. I do have meaningful and adult romantic relationships in spite of my disability (and sometimes even because of it). I have had many jobs, played in a band, went to parties, kissed girls, pleasured girls, created art, taught art, got a degree, learned languages, forgot languages, started writing a book, got scholarships but I also had visited on me things that most people do not experience in their lives. I had to see doctors since I was three years old, had surgeries at a young age, been absent from school for extended times because of an illness, felt intense social rejection because of my unusual body, tried to hide my disability from others and so on. So I’d conclude my own experience as different because of my congenital disability, but not so different that I am childlike per se (at least not for me). To most of my friends I am pretty normal dude. I think having a congenital disability, and the various social ineptness that goes along with it, is more complicated than most people think and is probably relative to the severity of disability at particular stages in life, how one was raised or sheltered by parents, if one had brothers or sisters, the type of illness responsible for the disability and other factors.
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Post by E on Feb 13, 2011 19:21:21 GMT -5
I suppose many girls wouldn’t even consider me because of that, or because I didn’t have a car, This is definitely true, regardless of disability. but these are girls I wouldn’t want to really get involved with anyways. This is not true. There are plenty of great women you definitely do want to get involved with that will not want you until you are independent. |
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Post by thegoodlife on Feb 13, 2011 21:27:11 GMT -5
I suppose many girls wouldn’t even consider me because of that, or because I didn’t have a car, This is definitely true, regardless of disability. No doubt this is the view of the larger population. But I don't buy it. I would never not consider a girl because she didn't have a car or if she lived with her parents while she's doing grad school or has some underlying medical condition that requires assistance from others. I often ask why persons would not consider another because of these things and the reasons given I don't think are sound. Example: I would not consider a girl because she doesn't have a car and takes the bus. Why? Because having a car means she's more self sufficient, a better person, a better partner. Well, is this really true? Does not having a car, or driving really mean the person is not self sufficient, a worse person, a worse partner? Probably not, if one is sticking with the facts. The reason why it's a huge issue for the guy to drive in this society has largely to do with expectations of gender, and expectations about abilities that are acceptable in the larger society. Another Example: I would not consider some girl because she lives with her parents. Why? Because living with her parents means she's not independent, more-childlike, lacks street smarts, can't function on their own. But is that really the case? I had a friend who was able bodied who lived with his parents while he was getting his masters degree because it was cheaper. In that time he married and had a kid. He subsequently moved out and is doing fine. I, however live with my parents in part because of my medical condition and require assistance in areas of my life. but these are girls I wouldn’t want to really get involved with anyways. This is not true. There are plenty of great women you definitely do want to get involved with that will not want you until you are independent. [/quote][/quote] Well, I would rather not get too deeply involved with a woman who would discount someone because I was not "fully independent", whatever that is. In the relationships that I've seen work with those who require assistance, the woman usually has abandoned in some degree the vague preference for total independence. They can do so in two ways, I think. First, they can abandon the notion of independence entirely as an inherently good thing. In other words, the notion of independence is somewhat a myth, rather we are all interdependent to certain degrees, and their partner is interdependent in a different way than others. Second, they don't abandon the notion of independence, but rather abandon common definitions or beliefs about independence. This would be like an attitude like “Just because my partner requires help with a swinging door, does not really mean he is not independent”, “Just because my partner lives with his parents for a period of time, does not mean is not independent”. In many ways persons with severe congenital disabilities challenge the notion of independence. Someone sticking to their guns and being inflexible with their own views of independence would certainly have difficulty remaining in a relationship with their partner who is dependent on others for certain tasks because of impairment. In addition, the disabled partner who recognizes the inflexibility of another’s view of independence might struggle to find self-worth in that relationship. I do think, however, there are people who are capable of much but do not fulfill their potential, as Emma’s story goes. In persons with congenital disabilities, I think this is expressed differently than others but is probably not an inherent part of having a congenital disability itself. They might play the sick role, and use that as an excuse not to accomplish much in life (probably because they can get away with it). There are also those who are able bodied and do the same or similar things with their potential. I see it all the time in a smaller scale with undergraduates. They could do very well in their studies and school if they decided to spend less time socializing and maybe spend an hour a day reading over their notes. It’s simple, but they don’t apply themselves. Other people who I worked with, who were able bodied didn't do their jobs to their full potential. As a result, they were never promoted and were promptly let go after their contract was up. I've noticed these co-workers are working in coffee shops, restaurants and other places now. But they could have done so much more, and just didn't. Now that, as Emma put it, is a turn off for anyone. |
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Post by ruthmadison on Feb 20, 2011 3:27:20 GMT -5
I think it might be slightly different between what men will accept in a woman and what women will accept in a man. I might be really off-base here, I was raised in a community with strong gender roles, but my impression is that men see themselves as providers and having a woman who isn't as independent would mean taking care of her, providing for her, and it's sort-of feminine to be cared for in that way. On the flip side, I think women are often looking for men they know will be strong and capable. Independence is a very important trait in a potential partner for me. I don't out of hand dismiss someone who does need care, but I will be more reluctant and go slower because I'm not sure whether I can be okay with that or not. Once a relationship is established, then sure, medical stuff comes up and that happens, but when considering a first date, I don't want to hear about those things. I'm interested in men who interact with the world, who want to make a living and provide for themselves and be as independent as they are able to be. I do expect a man to be strong enough to protect me emotionally. I don't care what kind of car a guy has, but him not having one makes me raise an eyebrow. I'm very scared of driving and I have serious problems with getting lost, so I love it when a man does most of the driving!  Living at home would be a huge red flag to me. There might be exceptions, like grad school, but at my age it would be less likely that's the reason someone is living at home. It suggests that you don't have drive and ambition, and the lack of those qualities in the man can throw the dynamics of a relationship way off. Some couples can handle reversed gender roles, but many think they can and can't. Like Emma, I was also with a guy where he was mostly living off social security and I was working, resentment built up on both sides very quickly (he was totally capable of working, he just wanted to fish instead). In that relationship it felt like my energy was too masculine. It sucks, but we do have to play the game a little when it comes to dating. We don't pour out all our baggage and all our problems on the first date. So, I think for guys it's important to emphasize the ways in which they are independent and in control of their lives when first getting to know a girl. Once she likes you and can visualize a possible future with you, then she'll be able to understand and accept the aspects of your life that are not as independent. I agree that how we think of independence might need to change a bit. No one expects that someone will live completely alone, isolated from society, living off the land in the mountains (okay, very few of us expect that). Of course we are all interdependent as a society. But I do think girls value whatever independence you do have as a sign that you can take care of her (at least I do). Again, I don't automatically dismiss a guy based on this, because the individual circumstances do play a big role, but it's going to raise a warning flag for me. I agree also that there are people of all levels of ability who squander and waste their potential. That is just never attractive to me! |
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Post by wheelieInCali on Feb 20, 2011 10:57:27 GMT -5
There are all different kinds of independence. I don't have a car but that doesn't affect how I live my life too much. We have a great public transportation system here in my city and if I need to leave the city for a while, as I occasionally do, I rent a car with hand controls. Yeah, ADA requires all car rental companies to provide cars with hand controls  . Thanks again ADA! Lets face it, 30 years ago most of us would be either dead or home bound because of lack of these laws and advances in science. The world is too diverse and there are too many kinds of people in it to pigeon hole anybody and tell them that they need to change. I've tried to change people in regard to their independence in the past. In retrospect, it might have been the wrong thing to do. I read a story on here that kind of puts things into perspective: Non fiction and not too erotic  The Hikkie I don't know how much work it took for D to convince his parents to actually let me come visit him. His parents where extremely overprotective, they cared for him and did everything for him because they couldn't always afford a nurse. D had sma; he was completely paralyzed due to his muscles wasting, but with full sensation. He had problems swallowing, coughing and sometimes speaking. His heart was affected and he got tired very easilly. Because he couldnt swallow easilly he also had feeding tube. During nights he had an oxygen mask*. (*Neither of us knew any better, by the time I got in touch with dr Bach and learnt about proper vents and coughassists it was too late, I was never able to convince his parents that this was what he needed). He was using an electric wheelchair that allowed him to almost lie down, his neck couldnt support his head and it also eased his breathing. When I visited him we wherent allowed to be alone. They literally made us leave the door open to his room where we could sit and watch tv or whatever, there was no privacy, no chance for us to just be us. During the days, they packed every hour with shopping, visiting touristy stuff,zoos, cinemas. Sure I enjoyed it alot, but every evening I was sent back to my hotel alone and I wasnt allowed to spend time with D. I dreamt every evening that D would come and stay at the hotel with me and we could lie in bed and just hold eachother close. But when we couldnt even speak to eachother privately there was no way we could be intimate. When out and when visiting the family they would introduce me as D's 'friend', never his girlfriend. But whenever we could we would sneak in a quick kiss, we would hold hands, or just sit and look into eachothers eyes. I could sit next to his bed and lean my head back and he could hold his hand to my cheek and caress me with the only finger he could move. We where so in love and he treated me like a princess, he was completely wicked, had a naughty sense of humor, he was caring and he was the kind of guy who always payed attention and who would write you poetry and give you presents every day. He was my very best friend. But it was difficult because there was no way for me or anyone to fully understand what he went trough every day. He was home schooled, isolated in his home without friends for so long, and he had huge issues with his confidence and sexuality. Ofcourse some days there was not much I could do to convince him he was awesome and sexy. His parents didnt see who he really was and he couldnt talk back to them or ask them for anything because he depended on them for everything. We had to be so careful because we knew that if they got upset, we would just never see eachother again, they would stop us and had even threathened to do so. We wanted nothing more than to be together (well that and he wanted to see lsu and saints win, lol, there was nothing that would come between him and the football ). One time we couldnt stop ourselves, we knew his parents where in the garden, but we didnt know when they would come back in, and I slipped my hand under his sweater. His skin was so soft and I could feel his heart beat so strong. Right then his dad came into his room and saw us, and D quickly made an excuse that he was showing me his feeding tube. When his dad left D whispered to me to quickly give him a hikkie on his chest because his sweater was still open. It felt incredible to leave my mark on him, it felt empowering, we couldn't show our affection openly but there was nothing they could do about that hikkie. When his dad saw it the day after and asked what it was D simply told him he thought it could be from his shirt button I think it's best when we don't judge anybody based on our own experiences or abilities. It's not easy to do, because it's so easy to pull out the "I'm more fucked than you but look at me" card. And the sad part is, it makes us feel better about ourselves. We all have our own trials and tribulations in life that make us who we are. If thegoodlife claims that he wants a girl who does not care whether he lives with his parents or not I choose to believe him. Isn't he the most qualified person to decide that? |
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Post by ruthmadison on Feb 20, 2011 12:05:51 GMT -5
There are all different kinds of independence. I don't have a car but that doesn't affect how I live my life too much. We have a great public transportation system here in my city and if I need to leave the city for a while, as I occasionally do, I rent a car with hand controls. Yeah, ADA requires all car rental companies to provide cars with hand controls . Thanks again ADA! Lets face it, 30 years ago most of us would be either dead or home bound because of lack of these laws and advances in science. The world is too diverse and there are too many kinds of people in it to pigeon hole anybody and tell them that they need to change. I've tried to change people in regard to their independence in the past. In retrospect, it might have been the wrong thing to do. I read a story on here that kind of puts things into perspective: Non fiction and not too erotic The Hikkie I don't know how much work it took for D to convince his parents to actually let me come visit him. His parents where extremely overprotective, they cared for him and did everything for him because they couldn't always afford a nurse. D had sma; he was completely paralyzed due to his muscles wasting, but with full sensation. He had problems swallowing, coughing and sometimes speaking. His heart was affected and he got tired very easilly. Because he couldnt swallow easilly he also had feeding tube. During nights he had an oxygen mask*. (*Neither of us knew any better, by the time I got in touch with dr Bach and learnt about proper vents and coughassists it was too late, I was never able to convince his parents that this was what he needed). He was using an electric wheelchair that allowed him to almost lie down, his neck couldnt support his head and it also eased his breathing. When I visited him we wherent allowed to be alone. They literally made us leave the door open to his room where we could sit and watch tv or whatever, there was no privacy, no chance for us to just be us. During the days, they packed every hour with shopping, visiting touristy stuff,zoos, cinemas. Sure I enjoyed it alot, but every evening I was sent back to my hotel alone and I wasnt allowed to spend time with D. I dreamt every evening that D would come and stay at the hotel with me and we could lie in bed and just hold eachother close. But when we couldnt even speak to eachother privately there was no way we could be intimate. When out and when visiting the family they would introduce me as D's 'friend', never his girlfriend. But whenever we could we would sneak in a quick kiss, we would hold hands, or just sit and look into eachothers eyes. I could sit next to his bed and lean my head back and he could hold his hand to my cheek and caress me with the only finger he could move. We where so in love and he treated me like a princess, he was completely wicked, had a naughty sense of humor, he was caring and he was the kind of guy who always payed attention and who would write you poetry and give you presents every day. He was my very best friend. But it was difficult because there was no way for me or anyone to fully understand what he went trough every day. He was home schooled, isolated in his home without friends for so long, and he had huge issues with his confidence and sexuality. Ofcourse some days there was not much I could do to convince him he was awesome and sexy. His parents didnt see who he really was and he couldnt talk back to them or ask them for anything because he depended on them for everything. We had to be so careful because we knew that if they got upset, we would just never see eachother again, they would stop us and had even threathened to do so. We wanted nothing more than to be together (well that and he wanted to see lsu and saints win, lol, there was nothing that would come between him and the football ). One time we couldnt stop ourselves, we knew his parents where in the garden, but we didnt know when they would come back in, and I slipped my hand under his sweater. His skin was so soft and I could feel his heart beat so strong. Right then his dad came into his room and saw us, and D quickly made an excuse that he was showing me his feeding tube. When his dad left D whispered to me to quickly give him a hikkie on his chest because his sweater was still open. It felt incredible to leave my mark on him, it felt empowering, we couldn't show our affection openly but there was nothing they could do about that hikkie. When his dad saw it the day after and asked what it was D simply told him he thought it could be from his shirt button I think it's best when we don't judge anybody based on our own experiences or abilities. It's not easy to do, because it's so easy to pull out the "I'm more f*cked than you but look at me" card. And the sad part is, it makes us feel better about ourselves. We all have our own trials and tribulations in life that make us who we are. If thegoodlife claims that he wants a girl who does not care whether he lives with his parents or not I choose to believe him. Isn't he the most qualified person to decide that? So true, we really can't compare our circumstances to other people's. Every situation is unique. I dated a guy who felt sort-of not disabled enough, most of his friends were "worse off" than he was, so he would try to make himself feel better by seeing how much more he had, but if you do that, then you also have to compare yourself to people who are "better off" than you. It made him miserable. Something that bothered me in India was when the guy who was with us gave money to this beggar woman in the street who had very shortened arms and legs, short enough for them not to be usable and she had no adaptive equipment, of course. (In most circumstances in India it is a very bad idea to give money to beggars, but this was sort-of an official beggar outside the ashram). He gave her a coin and said "whenever you're upset about your own life, just think you could have no arms or legs in India." It really rubbed me the wrong way. I don't like the idea that we give her money to feel like good people and also to thank God that we are not like her. Is her purpose in life just to make us grateful we aren't her? How awful. She doesn't live her life just to make us feel better about our own lives. Which isn't to say that she shouldn't be given money, unfortunately there are almost no options for people in her situation in India. I just don't think we should give money because of comparing our lives to her life. |
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Post by Inigo Montoya on Feb 20, 2011 15:11:15 GMT -5
I lived at home until I was 37. I don't know that I was terribly UNindependent. I paid my bills then and contributed to the household in a variety of ways. Monitarily, through actions and the planting of a variety of invasive plants. ;D My parents were happy to have me there, we got along great... my elderly pets lived there and I didn't want to abandon them or move them... well, it was easy. I did a couple of stints living on my own and moved back. I finally just got to an internal place where I needed my own space. Things are not that different now except that I talk to my parents less and my furniture is crappier. lol Well...the pets are all dead... and I started painting again because I can't paint the walls... those things are different.  I came to the conclusion, back when I was still looking, that I'm not sure I care about a job. There are lots of reasons, besides legs or hands that don't work, that someone might not be able to work. I've read on dis boards where I lurk and also talked to others for whom pain makes a regular daily routine rough. If a guy can't have a job then, so what? As long as there's enough fundage coming in to handle the bills and save some, I don't think I care. I like men in a population that, in general, has a difficult time finding and holding employment. So, if I was going to find what I wanted then there were things I might wind up needing to accept. I decided that was one I could deal with. Now, I'm not saying that I was looking for someone to sit around and play video games all day, while I work, there's a sincere need for conversation and someone who FEELS like a partner... but that doesn't necessarily have to involve both of us getting up and heading off to the daily grind. There's some validity for me in what Ruth says, I want someone who takes care of me EMOTIONALLY. I can handle the rest, really. Like, really, I can... I'm about to try and handle more even. (I hope, I hope... ;D) As far as the car business, where I live there really isn't any decent public transportation so it's impractical. If I lived where there was decent public transportation I'm not sure I'd own a car. My .02. |
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Post by ~Z28gal~ on Feb 20, 2011 21:19:05 GMT -5
For me, it's the gender roles rather than independence per se that can get to me. Like Inigo said, as a dev, I'm attracted to a population that sometimes CAN'T fulfill the "normal" male gender role, and I'm ok with that!!! But I still want to FEEL like the woman. I really have no idea how to describe this, it's just there or it's not. I was in a relationship with an AB guy who always held doors and drove, and I still felt like the man in that relationship!! Just because I'm fully capable of fixing my car or making travel plans or figuring out the subway system in NYC (AHHH!) all by myself, doesn't mean I want to do it!! The paradox that is the independent but old-fashioned woman. I think I'd be ok with a guy that couldn't hold down a job - I know that sometimes it just isn't feasible. But there's not having a job, and being, well, a waste of space.  Couldn't think of a better way to say it, but I think y'all get what I'm trying to say. MOST importantly, he has to be ok with ME having a good job. A lot of guys, wheeler and AB, SAY they like smart girls, but....  |
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Post by Emma on Feb 21, 2011 2:20:16 GMT -5
I paid my bills then and contributed to the household in a variety of ways. Monitarily, through actions and the planting of a variety of invasive plants. ;D Oh and for the 2nd time tonight you made me laugh, love you! |
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Post by Inigo Montoya on Feb 21, 2011 7:17:48 GMT -5
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. Thanks again ADA! Lets face it, 30 years ago most of us would be either dead or home bound because of lack of these laws and advances in science. The world is too diverse and there are too many kinds of people in it to pigeon hole anybody and tell them that they need to change. I've tried to change people in regard to their independence in the past. In retrospect, it might have been the wrong thing to do.
Couldn't think of a better way to say it, but I think y'all get what I'm trying to say. MOST importantly, he has to be ok with ME having a good job. A lot of guys, wheeler and AB, SAY they like smart girls, but.... 
