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    Social Isolation

    You know its going to happen. After awhile you develop a radar for it. Imagine the scene.....

    [~~~~~~ insert floaty dreamy lines here ~~~~~~ and sing twilight zone to yourself ~~~~~~]

    You and your dearest are out at the flicks with some friends, you run into more mutual friends – you chit chat in the lobby about the movie.

    You know, Brad Pitt was just perfectly cast in that!

    And dude! That car chase was just unbelievable!

    I don’t know why we don’t go to the movies more often.

    Yeah, us too – although I need to bring my own popcorn next time, geesh, the price!


    Then it comes. It. That moment. The one I dread every time.

    Hey, this was fun, its silly we don’t see each other more often.

    Yeah! Let’s all get together sometime soon!

    How’s next Friday?

    No, I’m out of town, how about 2 Fridays from now?

    Works for us.

    Us too.

    Yup, we're in!

    Ok, great! 8 pm-ish at our place?

    Ok … see you guys soon!

    Bye!


    Except. We aren't 'in'. My husband’s a wheeler, the kind of guy who never needs a seat anywhere, he brings his own. Most unfortunately, he is stuck in that seat since it’s a wheelchair. And even more unfortunately, private residences are almost never accessible to a wheelchair. There’s always “just a few steps” from the garage into the house, or steps from the front walk to the front door. Or the doorways are just a smidge too narrow in older homes. Or, in the odd case that the chair can actually can get past the outside barriers, the family room hangout zone with the big screen TV and pool table is in the basement. Or the sunken living room (… although thankfully, both for wheelers and the world at large, that fad went out in the 70s for the most part). Or you have priceless Persian floor rugs and everyone takes their shoes off inside your house. Or you’re just weird and make everyone take off their shoes anyway.

    We are then faced with only a few choices, and none of them are particularly appealing, although some more than others. The choices are (followed by the reasons I dislike them):

    Choice 1: Always invite everyone to our place - hey, why not! We’re friendly!

    If I invite people over, I have to clean the house. This is not an easy task with a full time job, a tornado of a kid, and a disabled husband (oh, and he requires my full time care too). Oh yeah, and I’m a slob. I’d rather come to your house.

    Also, it gets expensive to always host, even if you tell everyone to bring their own food and drinks - which by the way, makes you look cheap. Usually someone suggests ordering in food to make it easier, but the host (that would be me) pays the delivery boy and then the $$-chip-ins never really add up to the total and it makes me feel really awkward to ask people to pony up more cash. Its expensive to be disabled, people. Even if we had extra dough, I’d rather spend my extra cash on new eyeshadow.

    And, if you come to our house, it can’t be spontaneous. See above about cleaning. If you aren’t a blood relative or my best friend on face of the earth, you cannot come to my house without a 24 hour notice. Actually, now that I think about it, blind people are exempted, they are welcome anytime, just mind the piles on the floor.

    We have an obnoxious dog. Allergies? Scared of dogs? Then forget it.

    Choice 2: Suggest going to a restaurant – awesome, every public place is accessible!

    Its very expensive to eat out - and especially if it’s the only time you meet up with friends. Plus, to be honest, it’s a real pain in the butt sometimes because I have food allergies and so we have to deal with both the chair and my allergies and it makes me very self conscious.

    And did I mention it gets expensive?

    Ditto for movies, concerts, sporting events, etc.

    Choice 3: Demure - thanks so much you guys, but I have to wash my hair a week from Friday.

    I really hate having to come up with excuses not to come, because I really super duper don’t want to say “We can’t come because we can’t get into your house”. That makes the person doing the inviting feel like they’ve stepped in dog poo, more or less, particularly more casual acquaintances. No one wants to say "the wrong thing" to a guy in a chair to start with and so if we acknowledge that we can’t come because its not possible, well, they feel like they've said the wrong thing. Its really a lose-lose.

    Then over time, we just stop getting invited places. If one makes too many repeated excuses for not coming along, people eventually get the message. Unfortunately, it’s the wrong message – because we actually do want to come. We just can’t.

    Choice 4: Meet at the local library – now THAT is some good thinking!

    Ummmmm. No.

    Choice 5: Only have have disabled friends.

    This is a fairly limiting restriction (thankfully, for we don't wish disability on the world at large). Although we do have a plethora of disabled friends to whom we gravitate for this reason - and because you don’t have explain anything. And with your disabled friend you can swap funny stories about 'When I Fell Out Of My Wheelchair' and 'How Make Friends, Influence People, and Take a Shit When Disabled'.


    Social isolation due to being a wheelchair user is very real, and although I've been (or tried to be) funny here, its really not that funny. So, yes, please do invite us. Just remember our limitations.

    And better yet – build an accessible home, support universal design homes, don't dismiss it as just an expensive thing you don't really need when you consider home improvement, or when buying your next home. You never know when granny will move in - or when you will need those accessible features due to age, injury or both.

    I am really looking forward to the coming years when baby-boomers and beyond will demand that homes be routinely built with no barrier no step entrances, wide doorways, grab-bars and other handicapped friendly features. If I ever go to a home with an elevator, I’m going to drop to my knees and praise the gods of mechanical levitation (fair warning: we also may move in with you).

    But until someone outlaws fancy Persian rugs, which is unlikely, dirty wheelchair wheels will always remain an issue.




    [I write for a living, so I need to note here that the above is copyrighted (2009) and may not be copied or distributed without my consent. Thank you.]
    Last edited by zillazangel; 25 Jan 2011, 10:31 PM.
    Wife of Chad (C4/5 since 1988), mom of a great teenager

    #2
    Shannon - your thread ab out getting inspired me to put this up. NOT because I'm knocking you all meeting up somewhere accessible, I think you ROCK for getting them to acknowledge your needs and not just offer to carry you up the stairs. But I think you'll read this and totally get it ... as will most of us here.

    BTW, I personally didn't write the option of just getting carried up the stairs because Chad uses a C500 Permobil power chair - with him in it, it kisses up towards 500 pounds. So carrying him isn't an option!

    And lastly, some of you have seen this piece of writing in other contexts, sorry for the redundancy if you know me in other contexts.
    Wife of Chad (C4/5 since 1988), mom of a great teenager

    Comment


      #3
      zilla, maybe w/ your husbands situation its true, w/ most i would disagree. we sure arent socially isolated, hell our weekends are full for 2 mths in advance.

      sure we have a few relatives that are well off in both our families that could make their homes accesible but they dont so fuck them.

      most, not all, places out are gimp friendly. we love to go out, we love to entertain and we rotate family dinner everty weekend. 1 saturday my folks next saturday annalisas folks.

      i think your isolation is self imposed. you married a very dependant gimp and you have a kid. nothing wrong w/ either.

      imo here is another example of blaming the chair, in reality it could be the choices you have made.

      but sure there are friends houses you cant go too, so you go out for dinner then drinks back at home later. so w/that said, imo gimp isolation is self imposed.
      Bike-on.com rep
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      c4/5 inc funtioning c6. 28 yrs post.
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      Comment


        #4
        I love your post, Zilla. I relate to it a lot. It's funny when the summer and warmer spring months are upon us, it's a lot easier to go to different friend's homes because we can just sit outside on a patio (unless they have a deck) or go to a park with our dogs, whatnot. I know for full-time powerchair users it has to be much more frustrating to not "fit" into other residences, but even though i'm in a manual chair, it's stressful and anxiety-provoking for me to have to be lifted around.

        This past sunday I went to my 2nd cousin's birthday party. The first annoyance was that no spot was left open in the driveway for me to park and unload. Street parking is impossible because the road is too narrow to park in. Then when people start helping me up 4 steps, they automatically start trying their own method without stopping and listening to me about which way is best to carry my chair. It's always very rushed and i'm not given a chance to explain what is most safe and comfortable for me. I don't expect the world to stop and cater to me, but if you invite someone in a chair to your home, doesn't it make sense to make it easy for them (and you) to get in and out?

        A lot of my friends have apts upstairs or homes with stairs and I feel cut off from them because I'd rather not mess with getting in&out. I feel out of control of my body and have actually fallen out of my chair on occasion from people not paying attention helping me.

        It does get expensive having to go out to be with people! Sheesh, i hate architecture =)
        Courage, it would seem, is nothing less than the power to overcome danger, misfortune, fear, injustice, while continuing to affirm inwardly that life with all its sorrows is good; that everything is meaningful even if in a sense beyond our understanding; and that there is always tomorrow.
        -Dorothy Thompson

        Comment


          #5
          Originally posted by fuentejps View Post
          most, not all, places out are gimp friendly. we love to go out, we love to entertain and we rotate family dinner everty weekend. 1 saturday my folks next saturday annalisas folks.


          but sure there are friends houses you cant go too, so you go out for dinner then drinks back at home later.
          She addressed going out to eat already, and said that going out all the time can get expensive.
          Courage, it would seem, is nothing less than the power to overcome danger, misfortune, fear, injustice, while continuing to affirm inwardly that life with all its sorrows is good; that everything is meaningful even if in a sense beyond our understanding; and that there is always tomorrow.
          -Dorothy Thompson

          Comment


            #6
            lol spot on! i have stopped going to two friends who live together just for this very reason. they were all "we found a place you can come visit us in! we're excited!" so i get there for an event and the entrance has a GIANT step with a locked door that someone has to hold open while 2 ppl carry me in, then 5 HUGE steps down. i ask "and how did u think this was friendly for me?" and they went "well u can get into the bathroom!" WRONG i couldnt get thru the doorway. thank god i have the mitrofanoff so all i did was piss in a moutain dew bottle. i felt so dejected. i have stopped going when they invite me to do fun things like watching movies or game nights. and i can't invite them to my place as it isn't able body people friendly lol. no where for them to sit (i cant afford furniture and my place is way too small anyway)

            even other activities that ABs like to do and i get invited to it's like geez, i feel so left out. which is weird as i actually do a lot of things and am always finding free stuff to do around town.

            and they are building places with universal design but these places have stairs to get to the second floor. what if the second floor place is the ONLY one available? it all just blows imho
            "Smells like death in a bucket of chicken!"
            http://www.elportavoz.com/

            Comment


              #7
              .............
              Wife of Chad (C4/5 since 1988), mom of a great teenager

              Comment


                #8
                I have some friends that built a portable plywood ramp so I could get up there three steps... is there a possibility something like that could be built, and transported to houses with manageable entryways? I agree, restaurants get expensive--especially with kids. I enjoy reading your posts, because resound with me based on my husband's frustrations and concerns.

                Comment


                  #9
                  Originally posted by anban View Post
                  I have some friends that built a portable plywood ramp so I could get up there three steps... is there a possibility something like that could be built, and transported to houses with manageable entryways? I agree, restaurants get expensive--especially with kids. I enjoy reading your posts, because resound with me based on my husband's frustrations and concerns.
                  We have ramps that are "portable", but they are 70 pounds, and to get them in the van is absolute hell on earth, and then I have to tie them down really really well because they would become an extremely lethal projectile in the event of a crash ... so we just end up not ever doing that except in very rare instances.

                  My post is more about the everyday type of thing, because almost any situation can be "re-engineered" to work, even with a 500 pound powerchair, but its just really frustrating to not be able to be spontaneous like that, or to always have to be "that person" who has to be accomodated.

                  And thanks anban. I feel soooo guilty most of the time because I have it good: I have the legs, ya know? So I appreciate your support.

                  And I just have to say that John, you really really need glasses.
                  Wife of Chad (C4/5 since 1988), mom of a great teenager

                  Comment


                    #10
                    Ami,

                    I think you're too hard on yourself. I've always been a clean freak (though, I was my worst as a child), but I always went to other people's homes regardless of whether or not their environments were as clean as I wanted my personal space to be. It really doesn't matter if you're friends with someone.

                    Unless I'm going to be rolling into shit on the floor and sitting beside a dead roach, I really don't care about a few piles of clothes or dust.

                    Comment


                      #11
                      We have a 3 foot roll roll a ramp that I bring so we can get into the barber. There is only one in town that isn't afraid of the trachea. It is a tiny step, but the chair just can't make it.
                      I put a bungee cord around the ramp and secure it, but it is a dangerous projectile!

                      Comment


                        #12
                        Its funny how some people can always walk or roll in someone else's shoes or tracks without ever really trying the shoes or chair on LMAO....

                        There is only one superman who I predict will break down literally when his body gives out within the next 15 years from all steroids he has injected and junk juice he has drank to prove he can maybe compete in or even better finish a race...and that is if he lives through the lung cancer from smoking all his expensive cigars but hell he can always point fingers at someone else's life in someone else's thread....

                        LMAO life is unfair waaaaaaaaa waaaaaaaaa waaaaaaaaaaaaaa make some calls...call a lawyer... waaaaaaaaa waaaaaaaa waaaaaaaaa

                        Ami, your frustration is real or there would not be tons of people here who feel the same way. I didn't mean to hijack your thread...Some things just hit a nerve on some days...I am sorry you feel isolated
                        Last edited by darkeyed_daisy; 25 Jan 2011, 9:44 PM. Reason: correct grammatical error there/their
                        T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

                        My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

                        Comment


                          #13
                          Thanks for posting this Ami. I have to go pick up my child, but I will write again later when I have time.

                          I do have time to say one quick thing.... even though it's been said a million times before... you're an idiot fuente.

                          Comment


                            #14
                            I live in the town, everybody lives in appartments, I haven't even been in my children's homes for years. And to be safe, all my friends lives in the fourth floor without lift. It is not a few steps, no, the fourth floor. And when I never go and visit them, they stopped coming to me.

                            So I hear what you say, Ami...
                            TH 12, 43 years post

                            Comment


                              #15
                              It is not entirely hopeless. My brother adapted his house so I could get in and my sister had her designed/built to be really accessible. Last month my brother's wife broke her leg and had to use a wheelchair. One of the first things they did was to call and thank me for preping them. Also, a few of our local friends have moved into more accessible houses when the need for a change came. Some may have one step and the people keep a sheet of plywood on hand for when I visit. Some of them are now able to accommodate visits from their parents too. That said, bathrooms remain a major problem of most of them. I can usually get by but if you are doing IC, it is not good.
                              You will find a guide to preserving shoulder function @
                              http://www.rstce.pitt.edu/RSTCE_Reso...imb_Injury.pdf

                              See my personal webpage @
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