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Post by Emma on Dec 13, 2013 1:24:49 GMT -5
This is a good topic!
For those who don't know I'm married to a DAK amputee, full time wc user. I knew he would be able to get around w/o his WC but didn't know much beforehand about wheelchair use and accessibility issues. I guess I never looked into that stuff because I always just figured I'd be with a guy who walked. I don't think I encountered anything about his disability that surprised me.
As far as accessibility goes.......Like the rest of the AB population I didn't know much about issues with accessibility. I had briefly dated another WC user where I talked with him a little about accessibility but he said things like there is always a way to get in places but going anywhere with him was time consuming. He used a manual chair but was quite dependent on others to manage everything that came with it (getting it in and out of the car, finding an accessible bathroom, etc) Overall he was a lot less independent than my husband is. When we were dating I was pretty turned off by but his lack of independence especially because it wasn't because of his disability, it just was how he was brought up. Once I started dating my husband I quickly learned about issues with accessibility but luckily we lived in a part of the country that was built more recently so most places we went didn't have issues. Because my husband is an amputee he doesn't have any other health issues that other WC users live with so I can't speak to those things. WC accessibility is really the only thing I had to learn about but it hasn't been a deal breaker in our relationship.
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Post by lavly on Dec 13, 2013 2:13:43 GMT -5
i know sometimes we repte threads we have had on here before but when there about topics is this big and this deep then i for one am thankful that we do repeat them. it gives more member a chance to share there thoughts. so yeah thanks for the new thread... its great.
i had a disabled partner before my current partner so i knew what i was getting my self into. yet it doesn't stop the parts that are shit from being shit.
-im scared of health issue ie kidney stuff and so on. spinal fusions going wrong.
-accessibility shits me to tiars. i hate the fact that my dude cant get into my place. or other place we both want to go to.
-i hate the fact that the sacrifices i make are just expected and demanded of me, as a give in cos im the ab in the situation. this one is a hard one to expain but i think it by fare the hardest to indure.
-there is so much other stuff thats hard to deal with. its more personal and not something i cant write about in a quick ryply on here. maybe at some point ill try and answers it ... but trust me the shit doesnt stop on a superficial leavel.
but here is the thing ... i knew all this before i got into it... and i run towereds this ... this is the life i
want and im super luck to be have a change to live it with someone that rock my head and my heart. the good shit fare fareeeeeeeeeeeee out waighs the bad.
can i through back this question at the wheeler s reading ... "you know how you expect us to deal with the shit that comes from a disabilty (after all we are devs and we should know what we are getting our selfs into) ... well what will you do / change to make it easer for you significant other... to deal with the disabilty? or is it just something she has to exapte if she choses you as a partner?"
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Post by darthoso on Dec 13, 2013 3:40:45 GMT -5
can i through back this question at the wheeler s reading ... "you know how you expect us to deal with the shit that comes from a disabilty (after all we are devs and we should know what we are getting our selfs into) ... well what will you do / change to make it easer for you significant other... to deal with the disabilty? or is it just something she has to exapte if she choses you as a partner?" As I mentioned in the other thread, I have a rule that a girlfriend will never been a formal component of my care system. Not only is that for my own well being (in terms of if she sucks at her job and if we break up), but also for her too. I've burned out my fair share of personal assistants, I'm not going to add the stresses of a relationship on top of that. I've never had a girlfriend and the closest I've come was a Personal Assistant who worked for me in college (which is where the rule comes from), so I'm mostly just talking out of my ass in terms of how I THINK it'd work. A "management" fault I have with Personal Assistants is I tend to me more concerned with what they want to do than what I want to do, I'm willing to bet that'd transfer to a gf. I've always attempted to make my care system girlfriend compatible: I hire people who understand my piracy and can entertain themselves if I don't need them, they are from our age group/demographic (education) so them being around is like any other roommate (I like the Secret Service analogy, they blend in but are there if needed). Informal stuff really depends on what the girl is comfortable with. When I've been out with friends without my assistant they've been able to help me out no issue with nonCNA stuff (driving my car, handing me a beer). CNA care is a different animal and why I'm not going to date until I move out of my parent's house. I'm a control freak, I need 100% control over my care when a girl is involved in my life. The reason being is there are so many variables interacting with each other, that my parents acting as the "other bosses" is a non go. I've spend hundreds of dollars of my own money in those situations to retain control. 2 years ago my sister got married in NYC (I live in North Carolina), the originally plan was my parents would take care of me the 4 days we were in the City. Until I got drunk one night and asked a girl I've known since Kindergarten to go as my date (she lives in Brooklyn). No way was I going to be taken care of by my parents while trying to get laid. So I bribed an old roommate (the girl I kinda sorta dated above, awkward) and her fiancée (who lived with us for about a year, cool dude) with a 4 day NYC Vacation provided they took care of me. Hotel for us all was expensive as fuck but I got to do whatever I wanted free of my parents. On the day of the wedding my roommate knew I was trying to get laid and helped me plan the logistics to make it easy for my date (getting back to the hotel, how I'd get into bed, using the bathroom with her there). Everything worked great except my date failed to mention she had to leave at 10pm and she wasn't single. She broke up with him 2 weeks later (DAMNIT). |
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Post by lisa on Dec 13, 2013 14:58:29 GMT -5
A great topic indeed, although I guess it is also a very personal one. Anyway, I have to admit that there are parts of being together with a disabled guy I didn't expect nor imagined. So in retrospect I probably had no clue what I was getting into  . Sure, there are some things you are aware of, I think accessibility might be one of them, although as an AB you can simply blank it out from your thoughts. If I want to go to a place with my bf neither of us has been to before, there is a certain amount of research to be done before the start of the trip. To be honest, it is always quite a lot of work to figure out these things before meetings. One thing which I wasn't prepared for at all is the PAs. It is a huge factor to consider. Either there are people around you all the time or, if they are not there because I am, their work has to be done nevertheless. So, as much as I can support darthoso's decision not to mess around with gf and PA, it might still not always be the best solution if you want some privacy. On the other hand, having to do all the PAs' work during our meetings takes not only valuable time but also energy. Plus then there's the other thing: If you really need the PAs and organize them to be there at a certain time they show their best side in not being reliable at all. Anyway, this is something I didn't expect and am still struggling to deal with. Something else which comes to my mind is the general amount of planning everything needs. Don't get me wrong, I am a planner and not really spontaneous in my life in general. But being with my bf has shown me how free to do what I want to I actually am. I can just go out in the morning and come back in the evening and plan the time inbetween how I want to. I do not have to try to stick to a routine (ok, I kind of do, but it's much easier to do). About the sacrifices, yeah... I guess at times there can be the feeling that you're doing a lot just because you're the AB partner. And you're mostly the one who has to adjust, in a lot of ways. Other than that, there is also the societal factor which I had underestimated before getting into it. But I'm not really in the mood to talk about that now. In general I have the feeling some of the guys worry about the wrong things. No, I do not have a problem with the fact that there's somebody else who sees my bf naked. Or that he needs help with everyday things. Or that his parents are at least sometimes involved in his care. It's other things that have the potential to freak me out. |
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Post by matisse on Dec 13, 2013 16:36:49 GMT -5
-i hate the fact that the sacrifices i make are just expected and demanded of me, as a give in cos im the ab in the situation. this one is a hard one to expain but i think it by fare the hardest to indure. Interestingly, this is one that is also particularly difficult for me, even though I am on the receiving end of the help. |
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Post by Deleted on Dec 13, 2013 16:54:00 GMT -5
I will preface this by stating that I am not currenty in a relationship. That being said, I know I could handle the "baggage" that come with being in a relationship with a disabled partner. Maybe it's my professional training, or my flexible nature, or because I want it, but I could deal with repeated hospitalizations, doctors visits, accessibility issues, etc. I could also handle the whole PCA thing. The only time I would have an issue with that is in times of intimacy. For example, if my SO and myself were going to have that special time, I'd want to be the one to carry out the task (such as transfers, if need be), but that's just me being selfish. I also don't consider it baggage though. To me, dealing with that is no different than expecting someone to deal with my issues (crazy family, crazy job, etc). Just my single dev two cents!  |
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Post by mikefatty on Dec 13, 2013 17:03:35 GMT -5
can i through back this question at the wheeler s reading ... "you know how you expect us to deal with the shit that comes from a disabilty (after all we are devs and we should know what we are getting our selfs into) ... well what will you do / change to make it easer for you significant other... to deal with the disabilty? or is it just something she has to exapte if she choses you as a partner?" this is something that i recently also gained some insight on. my parents had to go out of state to take care of my grandma for almost 4 months, so they let my GF move in to help take care of the house and me since they would be gone. i am fully independent but i have a pressure sore im dealing with. i have wound care that needs to be done. and i have home health that comes and does the care. i have all my supplies organized. im very particular about the way i have everything done. i have my routines. the way i do things. keep things organize things. everything has a rhyme and a reason with my OCD. when someone comes into that it throws a lot of stuff out of whack when they are not used to being in a OCD environment. i start running into things cause stuff is on the bedroom floor. things end up being moved where they are not in the relm of immediately being able to be reached properly i start to misplace things then find out they were touched by other hands because those hands didnt think that the stuff belonged there. the list goes on. i tried my hardest to not let it really get to me. it is frustrating. but i figured overcoming the challenge was a task i needed to complete. order in the living space was the stem of many many arguments. small things should not become that much of a problem. but at the end of the day i realized that it is super hard for me to let someone invade my personal space. it was ok when she would come over for a day here or there. and spend a night. but living together was a whole nother ball game. as some may have expected now that my parents are home. she is not. even though she did have the option to stay. soo much stress was put between us by trying to live together. i like things clean and neat all the time and she hates cleaning. it hase to become a scuzzy mess for her to feel like its time to clean.. ughhh... anyhow. to answer the question. i tried to change to help the situatioon and make it easier to live together. but when someone gets irritated every time you ask a favor no matter how far between. it sucks. id like to say that i want someone to be able to accept my OCD and not force my hand to try and change it. might be slightly off topic but ya. i think there are many aspects of a wheeler that could be considered when choosing to move in. |
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Post by matisse on Dec 13, 2013 17:18:47 GMT -5
can i through back this question at the wheeler s reading ... "you know how you expect us to deal with the shit that comes from a disabilty (after all we are devs and we should know what we are getting our selfs into) ... well what will you do / change to make it easer for you significant other... to deal with the disabilty? or is it just something she has to exapte if she choses you as a partner?" I have never and will never let my disability be thought of as something "extra" in the relationship that changes the ordinary compromise dynamic. I figure we each have things the other person has to deal with. My basket includes a disability and hers doesn't, but hers includes things that are not in my basket. |
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Post by darthoso on Dec 13, 2013 17:22:03 GMT -5
Mikefatty: but when someone gets irritated every time you ask a favor no matter how far between. it sucks. SOOOOOOO true, trying to figure out how to ask for something without pissing them off is generally a sign of burn out. I had someone give 2 weeks notice a year ago because I forgot to say thank you when she got me a glass of water. edit- markup is being stupid. |
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Post by lavly on Dec 13, 2013 17:53:55 GMT -5
i have all my supplies organized. im very particular about the way i have everything done. i have my routines. the way i do things. keep things organize things. everything has a rhyme and a reason with my OCD. when someone comes into that it throws a lot of stuff out of whack when they are not used to being in a OCD environment. i start running into things cause stuff is on the bedroom floor. things end up being moved where they are not in the relm of immediately being able to be reached properly i start to misplace things then find out they were touched by other hands because those hands didnt think that the stuff belonged there. the list goes on. i tried my hardest to not let it really get to me. it is frustrating. but i figured overcoming the challenge was a task i needed to complete. order in the living space was the stem of many many arguments. small things should not become that much of a problem. but at the end of the day i realized that it is super hard for me to let someone invade my personal space. it was ok when she would come over for a day here or there. and spend a night. but living together was a whole nother ball game. as some may have expected now that my parents are home. she is not. even though she did have the option to stay. soo much stress was put between us by trying to live together. i like things clean and neat all the time and she hates cleaning. it hase to become a scuzzy mess for her to feel like its time to clean.. ughhh... anyhow. to answer the question. i tried to change to help the situatioon and make it easier to live together. but when someone gets irritated every time you ask a favor no matter how far between. it sucks. id like to say that i want someone to be able to accept my OCD and not force my hand to try and change it. might be slightly off topic but ya. i think there are many aspects of a wheeler that could be considered when choosing to move in. fatty i so had to deal with this ,,,, i wish could tell you how much this was us! it still does. but see can you see how its shit from your gf point of view ... she has to do everything your way cos of your ocd ... and there is always valied reason why she has to do that. in the end she feel like she cant breath wrong or it will get in the way of the rotien. this what i mean by what are you will to do to acomidet her needs, ie she wants to live easy and carefree... and when she is with you she cant just chill. i have to say that i did break my dude on this one ... poor guy didnt have a change. but there was a rule i stuck to it was a lil ryme he use to say ... i forgotn it now but something along the line of if i leave my shoes on the floor i dont get play. needless to say i found a spot for the shoes fast. |
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Post by mikefatty on Dec 13, 2013 18:13:12 GMT -5
she has to do everything your way cos of your ocd ... and there is always valied reason why she has to do that. in the end she feel like she cant breath wrong or it will get in the way of the rotien. this what i mean by what are you will to do to acomidet her needs, ie she wants to live easy and carefree... and when she is with you she cant just chill. the thing is i did change and everything in the house went to shit and got all scuzzy and dirty. clothes everywhere. it was a mess. i cant live like that. i let her live the way she wanted too. but in the end yes. i know she feels she cant breath the wrong way and it may get on my bad nerves. but it shouldant have to be like that. it actually makes things worse and shell mess shit up even more lol. cause she is nurvous. she knew how i was. she told me she could deal with it. she was wrong. and i did everything i could to accomodate her. but it still didnt work. at least i felt like i bent in half even if it may have not seemed as much to others. |
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Post by AlrightyAphrodite on Dec 13, 2013 20:50:57 GMT -5
i have all my supplies organized. im very particular about the way i have everything done. i have my routines. the way i do things. keep things organize things. everything has a rhyme and a reason with my OCD. when someone comes into that it throws a lot of stuff out of whack when they are not used to being in a OCD environment. i start running into things cause stuff is on the bedroom floor. things end up being moved where they are not in the relm of immediately being able to be reached properly i start to misplace things then find out they were touched by other hands because those hands didnt think that the stuff belonged there. the list goes on. fatty i so had to deal with this ,,,, i wish could tell you how much this was us! it still does. but see can you see how its shit from your gf point of view ... she has to do everything your way cos of your ocd ... and there is always valied reason why she has to do that. in the end she feel like she cant breath wrong or it will get in the way of the rotien. this what i mean by what are you will to do to acomidet her needs, ie she wants to live easy and carefree... and when she is with you she cant just chill. i have to say that i did break my dude on this one ... poor guy didnt have a change. but there was a rule i stuck to it was a lil ryme he use to say ... i forgotn it now but something along the line of if i leave my shoes on the floor i dont get play. needless to say i found a spot for the shoes fast. My floor would be IMMACULATE. You have a smart one there, Lav, that guy knows how handle a dev |
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Post by BA on Dec 13, 2013 22:58:07 GMT -5
I totally GET the OCD. I am not disabled but throw stuff around on me and I freak. For me, I need stuff a certain place to control my environment. I have a total appreciation for needing things in a specific place in order to do a routine.
There were 2 things that were most difficult for me in my relationship with a disabled guy.
One is exactly what Lavly said -"i hate the fact that the sacrifices i make are just expected and demanded of me, as a give in cos im the ab in the situation. this one is a hard one to expain but i think it by far the hardest to endure." Now, when I was dating (disabled guys included), we were both a bit young and it seemed like in those relationships, he was allowed to have issues but I wasn't. At times I felt neglected emotionally. Like I was a giving machine. Eventually I burned out. I will bet that it would have been different with a more mature and 'together' guy.
On a brutally honest note, I can not be with a guy who requires a PCA. I used to think I could handle it, but I cannot. I know at some point I would need to pitch in and I don't have the stamina to do that. It frightens me.
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Post by gordito on Dec 14, 2013 1:37:49 GMT -5
Hey, I frequent this forum sporadically after some devotees reached out to me and I've spoken with a few of the members but this topic seemed really interesting to me. I've spoken to some devs and earlier this year I got out of my first serious relationship post injury and it was a huge eyeopener into the logistics of dating while being a wheelchair user. She might not have been a dev but I guess there's not a big difference to me, women are women. I like to pride myself on being pretty much fully independent but there were definitely things that happened that made her realize "I don't think I knew what I was getting myself into", saying that there were a few things I didn't even think about. I'm going to make the assumption that the majority of the ladies on this forum are pretty knowledgeable on disability issues so the basics are obvious. Your significant other is in a wheelchair. Also, I can't speak for those who need a pca 24/7. The biggest issue was time. I'm saving up but I'm a college student so transfers to her car plus the time it took her to throw my chair in the trunk isn't something too horrible but we're both busy ppl and I could tell it tired her out physically after lets say a day out doing multiple activities. Everything daily takes just a little bit longer. when you're single you do things on your own time but getting dressed takes longer, finding things takes longer, etc. When it comes down to it, people are instinctive and after the attraction dulls a little we let our human tendencies out on our loved ones (its what makes us more lovable right?). Well just like guys complain about girls taking forever I guess the same could be said about the latter. Another thing.. accidents happen that blur that line between a carer and a gf. I think its important to never mix the 2 but its unavoidable at times. We were taking a road trip and I got the urge to take a leak. I can't just pull over and run in the woods so she had to be cool with me catching into a water bottle (not normal bf/gf stuff lol). She even helped holding stuff in place (I'm sure she just didn't want me dropping piss in her car) but things like that happen and I feel a gf needs to be kinda cool with it because.. what else was i suppose to do. I guess that falls under the things she's just expected to do right? It sucks but it really wasn't that big a deal in my relationship, she didn't mind. Gotta be understanding that things take a few more minutes. Another thing is being cool with other ppl giving assistance... pca or just friends that are girls giving you a ride to school. Um.. accessibility was bothersome sometimes. I'm awful about accessibility.. i never call ahead, check or anything, I'm a total dude. When its just you and her she has to help you up that 1 step or ride a ride at the park alone because you couldn't get on, etc. This might seem trivial but it adds up (to me at least) and the level of injury is a factor on how much there is to deal with. Guys reading this, never stop being grateful, even if you get in a fight driving home. say thank you for her getting your chair out of the trunk.. or even giving you a glass of water. Man m glad I'm not ocd.. it made living with my ex normal. The place would get messy but we would clean it together. Cooking was an issue too cuz of things taking longer. I like to cook so if I cook i would like help with the dishes because of how long it takes me to clean dishes. I think the line, as far as sci goes, is c5-c6. Anything below needs significant help. c5-c6 you have a range of dependent and independent guys. but yeah.. planning is HUGE for active couples, patience is key for the first stages of when relationship goes from just dating to this is the person i love. The guys have to be ready also. If you have a wheelchair dude with insecurities or lack of confidence you're in for a bumpy ride ladies.Anyways, just putting my 2 cents in since I feel like I went through this whole thing not too long ago. To be honest, does it really matter? jumping into the unknown is exciting and even if it goes horribly wrong you get the experience and some good laughs out of it. Just know when to leave a situation that isn't healthy for you anymore. Communication >>>
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Post by Ath on Dec 14, 2013 10:10:38 GMT -5
I 'got rid of' my own ocd because I had to give alot of my things up when I moved in with dude but I'm only glad that happenned. I defo had a hoarding thing going so it was only positive.
anyway
I knew what I was getting into at large, but I wish I had known what would be required of me when it came to his anxciety issues. Now I know better how to encourage him without being too pushy, eventhough, I still don't always understand what worries him.
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. Sure, there are some things you are aware of, I think accessibility might be one of them, although as an AB you can simply blank it out from your thoughts. If I want to go to a place with my bf neither of us has been to before, there is a certain amount of research to be done before the start of the trip. To be honest, it is always quite a lot of work to figure out these things before meetings.
