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    #16
    My parents have a ramp in their house (they live the next block over), and our close friends would do anything for us to get in if needed, but its just the everyday kind of thing that drags at me. I just wish for once I could say "awesome, see you at your place on Friday night!" and not have to think about it. That's all I am trying to get across.

    Thanks for all the support (with one exception ah-hem). I was really afraid to post this because I didn't want to be ripped to shreds. But even if our situation is different in some ways from most, it sounds like alot of it rings true for many, if not most. But I will say for the record that "imo here is another example of blaming the chair, in reality it could be the choices you have made" REALLY chaps my ass. Not sure what other choices we could make?? Oh wait, don't be paralyzed ... or be rich. Oh well, its really not worth the fight with him.
    Wife of Chad (C4/5 since 1988), mom of a great teenager

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      #17
      The friends' and relatives' homes I agree with! Pretty soon they stop asking. That is frustrating. Winter doesn't help.
      Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

      T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

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        #18
        OK another problem that's isolating is the carer gets to your place at 8pm, so you have a problem, you want to go out, you need to contact your agency to tell them that you are going out and can the carer come at 10pm, the agency requires 1-4 days notice, so spontaneously going out to dinner and show or just to dinner is a bit tricky. I usually go to bed at 8.30pm, watch tv and read. most of my family have in-accessible homes so its easier for them to come here bbq in summer (winter is a whole different ball game) and leave a pile of dishes in the sink for the carer that evening or next day.

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          #19
          Don't hate, but just because it's difficult doesn't mean it's not possible. I know things are different for me bc I'm in a manual, but when you isolate, people will think it's because YOU'RE not comfortable- and honestly- all the reasons you posted are why YOU don't want to put in the work to socialize.

          Why don't you just reach out to those friends when you do things you want to that everyone's interested in? 'hey, we're going to check out that exhibit... would you like to join?' or Meet us at the park, we've got a bottle of wine & Scrabble' or 'We're going to waste $20 bucks on Harvey Keitel's 7,296th movie, come along' etc? Or schedule some time to just have coffee (hot chocolate, iced tea) with a girlfriend by yourself!


          And if you're getting stuck with the bill when ordering in, the dynamic is off, take control of the situation, 'Here's our $XX, why don't you call and order food while I make drinks..."

          There are 5 ways around hanging out with someone and not going into their house, you just have to want to do it...

          I have these, and they've been super helpful, because my bff can help if it's steep to get in- but i don't think they'd be helpful for a powerchair but I'm sure there is something similar...
          http://www.discountramps.com/wcImage...air-ramp-3.jpg
          An administrator made me remove my signature.

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            #20
            Zilla,
            I love your post. This has bothered me for many, many years too. I am grateful I have friends, but have always wondered if the situation was reversed, would I find someway of making my house accessible for them? I am pretty sure I would, so there is disappointment that even the people who consider me a terribly good friend have never felt the need to grant me access. I am with you entirely on the "don't drop in without at least 24 hours notice." I live alone, and often opt to have things where I can reach them easily instead of where they would look the neatest. My house is clean enough, but it certainly could be more tidy, and to be honest, making it tidy for someone to visit is not only a chore to do, but a total waste of time because I really do need things where I can manage them. Hell, even having company reach some bowls, serving dishes, whatever off the top shelf pretty much insures they are going to stay at navel level until someone else comes in that I can ask to return them to their lofty reaches.

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              #21
              Last Saturday I was invited to a neighbor's house for a potluck to welcome some new neighbors. The woman hosting the party called me and said that her husband and this other neighbor would be happy to carry me up the stairs. I didn't want to go, because I didn't want to be carried up the stairs, but I also didn't want to NOT go. So I went, and I was carried up the stairs. Note: A portable ramp would not have worked because there were too many stairs. Almost all the houses in this neighborhood have at least 5 steps to get to the porch.

              Once I was inside, I felt isolated. It was so crowded that there was no way for me to mingle. I literally sat just inside the front door the entire time. People came to talk to me of course, but that's not the same. My daughter went and got a plate of food for me. I didn't even ask her to do it for me. She just knew that I wouldn't be able to get to the food table.

              And then there is the issue of speaking to a standing adult eye to eye.

              And Medicare says the iBOT is a "luxury".

              BTW, I do have an iBOT. Before I got the iBOT, I was so excited for it's stair climbing function. Turns out climbing stairs in it is too scary. (I totally love the Balance and 4-Wheel Drive functions though.)

              So anyway... there is no way my neighbors are not going to spend thousands of dollars to make their homes wheelchair accessible. There are only two real solutions to this problem. 1) A cure for SCI, or 2) Better wheelchairs.

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                #22
                Fiesty, I don't mean to disagree with you, but I have to say that it really really is different in a manual chair. And the things you mentioned just doing - all take money (of which we have none at the moment). And there are 5 ways of hanging around that don't involve going to their house ... I kinda wrote them out. But you are right, there are certainly ways around it, and things to do that are free, I guess I'm just moaning in a way (not meant sarcastically) - I wanna be like everybody else sometimes. You know? Just be able to say sure! let's hang out at your place tomorrow.

                I actually wrote this post originally in another setting, and it was aimed at AB folks, to raise awareness of why its hard for us. Are there ways around it? Sure, but they are not always good, easy, CHEAP (or free) and let me tell you - putting in work to socialize sometimes makes it not worth it. And please remember that I am coming from a position where my husband is totally paralyzed, he can only shoulder shrug and turn his head. So our obstacles are significantly bigger than the usual.

                But to everyone, and many of you see it, my main point really is that we're not like other people. We can't be spontaneous and meet up Bob's place tomorrow. Its harder for us - thats all I'm trying to say.

                ETA: Shannon, I really really understand what you said! I'm really glad you understand my point too - I wish chad could have an ibot (or everyone in a power chair actually!)
                Wife of Chad (C4/5 since 1988), mom of a great teenager

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                  #23
                  I feel like the only times I can avoid the expense of a restaurant meeting or the cleaning AND expense of having someone to my place is during the summertime, when picnics work very well. Yesterday it was -2F here, so picnics are a long time off, and I also miss the spontaneity of just running into someone else's home. I have friends I have known for 30 plus years, and have no clue what the inside of their houses look like beyond an occasional peek at a photo they have taken of an event there that I could not attend.

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                    #24
                    Here's another example of feeling isolated.

                    Last week I was invited to the symphony. I was invited by this guy who has a friend who works for the symphony. His friend told him that the seats she got for us were "excellent".

                    The building it was located in was a beautiful old building downtown. Our "excellent" seats were in the balcony. There was a elevator. So we get to the 2nd floor and we ask the usher to show us to our seats. Our "seats" were not even seats. They stuck us in this little cut out area on the side that lead to a door for the janitor's closet or something. We were totally isolated. My date had to sit in a portable metal chair. It was bad. This was the 2nd date I had with this guy. Nice, huh? I had a 3rd date with this guy later in the week and we had a long conversation about accessibility issues. He brought up the subject so obviously it was something that bothered him.

                    Between that and the potluck at the neighbor's house on Saturday, I couldn't get thoughts of just never leaving the house again out of my head. Then today I get the email inviting me to a meeting at a friend's inaccessible home. IT'S SO FRUSTRATING!!!

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                      #25
                      Originally posted by zillazangel View Post
                      Fiesty, I don't mean to disagree with you, but I have to say that it really really is different in a manual chair. And the things you mentioned just doing - all take money (of which we have none at the moment). And there are 5 ways of hanging around that don't involve going to their house ... I kinda wrote them out. But you are right, there are certainly ways around it, and things to do that are free, I guess I'm just moaning in a way (not meant sarcastically) - I wanna be like everybody else sometimes. You know? Just be able to say sure! let's hang out at your place tomorrow.

                      I actually wrote this post originally in another setting, and it was aimed at AB folks, to raise awareness of why its hard for us. Are there ways around it? Sure, but they are not always good, easy, CHEAP (or free) and let me tell you - putting in work to socialize sometimes makes it not worth it. And please remember that I am coming from a position where my husband is totally paralyzed, he can only shoulder shrug and turn his head. So our obstacles are significantly bigger than the usual.

                      But to everyone, and many of you see it, my main point really is that we're not like other people. We can't be spontaneous and meet up Bob's place tomorrow. Its harder for us - thats all I'm trying to say.
                      No, I do get your point, and I'm sure that we can all relate, and I've been almost that paralyzed (C5-6-7 incomplete) so I know where you're coming from. I used the power chair as my chair for the first portion of my injury, but I didn't have a van, or a spouse- so I know how EXTREMELY limiting it CAN be... I just know that injuries control so many of your daily functions, I don't want you to think that you can't still be social. Many people isolate for various reasons or whatever, but I guess I'm just clumsily trying to say control it instead of letting it control you... you know?






                      p.s. when you ARE ready to get out, usually you can google search 'Free' and the name of your town and/or county to find out what's up in your area for chear- especially now that it's going to be summer.
                      An administrator made me remove my signature.

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                        #26
                        After my daughter is on her own, I'm getting an apt or condo in a high rise in downtown. That way all of my neighbor's homes will be accessible.

                        The date I had last week... he lives in a condo downtown... it was SO nice to be able to get to his place without any help. In fact, I think it was the only time I ever dated someone who lived in a place accessible (other than Cspine!)

                        The last guy I dated dropped me when getting me down his front steps.

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                          #27
                          Dave in his chair weighed 650 when he left rehab. It is several steps into my mother or sister's house and once in there is not a lot of room. (His mother's house is 150 miles away and 5 steps un into a small rambler.)
                          His brother has a large one level house in our town which would be easy to have a semi portable ramp (roll a ramp) but he has been trying to sell it the last couple of years.
                          We have been having family things at our home because our set up is perfect for Dave. Usually my family brings most of the food and we share cost.
                          Next month his Mom turns 70 and we are having everyone from out of town come here. We got a party room in a restaurant and the family can stay with his brother.
                          BUT-there will be about 20 people and I wish BIL would have us all over to his much larger place also.
                          I suggested renting a ramp, but with all of the snow piled around I don't think it will work. Plus he was just not very receptive.
                          When his brother with 4 small kids were visiting we twice took them to Chuckie ($$$)Cheese and another time made a picnic and went to a park.
                          Winter is what is making us feel extra isolated. In the summer we can get quite a few people included in the attached garage or at least sit on the patio.
                          Dave had been stuck inside 3 weeks yesterday and we ventured out to a small near by mall for a burger and a beer.
                          He used to ice fish which is out of the question now. My sister is remodeling her kitchen and he would have been in the middle of that, but she sends pictures.
                          We went to his nieces graduation in Mpls and mainly stayed in the garage because their house is a split. They felt bad, but was not much they could do with their set up.
                          He has said he would not mind being carried, but he is just too big.
                          Sigh. Just my mindless rambling. This winter isolation is getting to us.
                          His toes are taking so long to heal and it has been so bitter cold and icy.

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                            #28
                            Does it bother you when a close friend or family member buys a new home with no thought to how accessible the house is?
                            For myself I visit with friends that have the most accessible houses.

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                              #29
                              Originally posted by Kris View Post
                              Does it bother you when a close friend or family member buys a new home with no thought to how accessible the house is?
                              For myself I visit with friends that have the most accessible houses.
                              It depends on how good a friend it is. I don't expect anyone to make their bathroom usable by me, nor do I need to access more than the living room, although the kitchen would be nice because then I could help out a bit, but when I have at least two friends whose houses have about four stairs to get in I do wonder why they haven't thought about even a temporary ramp to get me in occasionally.

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                                #30
                                We met a nice middle aged couple at the clinic last summer. She had MS, in a power chair and also a trachea. She was having trouble with speaking valve and Dave had some hints.
                                We had a lot in common, wanted to compare notes about docs, chair repairs etc and we invited them over to visit.
                                Sadly she passed away shortly after of pneumonia.

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