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Thread: Social Isolation

  1. #41
    Senior Member Kris's Avatar
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    Quote Originally Posted by LindaT View Post
    What an a**hole FIL!!!
    Yep - and he is the nice one. His sister asked me not to wheel on the carpet. It might wreck it. Never been back.

    I feel that if you invite me over you invite all of me. Snow on the tires and all.

  2. #42
    Quote Originally Posted by canuck View Post
    It really bothered me when my brother bought a place with stairs because not only am I in a chair our dad was a hemiplegic as a result of a stroke and his walking is limited. Brother says the next place will have a bathroom on the main level.(bathroom access is my big issue, otherwise I can adapt to just about anything)
    You have a brother like that too? I thought I was the only one.... The real kicker is, every other model in the new subdivision is more accessible than the (back split) house they choose. Duh! Your brother is in a w/c!

  3. #43
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    Quote Originally Posted by zillazangel View Post
    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.]
    Great post zillazangel!

  4. #44
    I was 8 when I was injured. My bedroom was on the second floor of our house. My dad's solution was to have a wheelchair at the bottom of the stairs, and another one at the top. In the morning, he'd carry me down the stairs, at night he'd carry me up the stairs. I couldn't go to my room during the day. I quickly got sick of this, so one day when no one was paying attention, I drug myself up the stairs. Someone must have told my dad that letting me go up and down the stairs on my butt wasn't a good idea, because he decided to build an elevator. Building an elevator was a piece of cake for him. He did it entirely on his own. I remember thinking, why the heck didn't he build this sooner?

    I put scrape marks on the toilet, tub, sink, walls, doors, etc with my wheelchair. He hated that. I tried my best to not do it, but I couldn't help it. So he said he would build me my own bathroom. I thought, yay, my own bathroom! He built it in his goddamn shop. Cold, dark, cement floors, isolated from the rest of the house. And then he banished me from the regular bathroom.

    When I was 15 we moved. As I was being introduced to our new house, I said, "Where are you going to put the elevator?" He said that he wasn't going to put an elevator in because I was only going to be there for 3 more years and I could go up and down the stairs on my butt. There wasn't even a bathroom on the main floor. So every time I had to use the bathroom or I wanted to go to my room, it was up the stairs on my butt.

    Oh, and my parents had to bump me up and down the steps to get in and out of the house because he didn't want an unsightly ramp.

  5. #45
    Senior Member canuck's Avatar
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    I think his wife had a bit of influence on that, she liked the house, I think they were also planning on not staying in it as long as they have. He assures me that he will make a main level bathroom. His house is only a hassle in the winter, the rest of the year we're outside and I have more "options" for places to cath (large private lot)

    Quote Originally Posted by CowboyCrip View Post
    You have a brother like that too? I thought I was the only one.... The real kicker is, every other model in the new subdivision is more accessible than the (back split) house they choose. Duh! Your brother is in a w/c!

  6. #46
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    Quote Originally Posted by Kris View Post
    Yep - and he is the nice one. His sister asked me not to wheel on the carpet. It might wreck it. Never been back.

    I feel that if you invite me over you invite all of me. Snow on the tires and all.
    Kris, I am sorry to hear this, and can imagine that it must be painful. It would be for me, at least. Years ago I had a barely post high school friend that bought a new super duper car which he brought over to show me and take me for a ride. That sounded good to me, but he said he didn't want to put the chair in (I used a manual chair then) because it might get something dirty. It hurt, and hurt more because I was pretty new to a chair so everything was more sensitive then. Karma is a bitch though because he was driving at night in an isiolated area of Maine and hit a very large deer. He was OK, but the deer and the precious car were both totaled.

  7. #47
    Senior Member Clipper's Avatar
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    I hear ya, Ami. The logistical issues we face as a result of our mobility challenges can be physically and mentally draining -- for both the SCI person and their significant other/family.

  8. #48
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    Quote Originally Posted by Shannon View Post
    I put scrape marks on the toilet, tub, sink, walls, doors, etc with my wheelchair. He hated that. I tried my best to not do it, but I couldn't help it. So he said he would build me my own bathroom. I thought, yay, my own bathroom! He built it in his goddamn shop. Cold, dark, cement floors, isolated from the rest of the house. And then he banished me from the regular bathroom.

    When I was 15 we moved. As I was being introduced to our new house, I said, "Where are you going to put the elevator?" He said that he wasn't going to put an elevator in because I was only going to be there for 3 more years and I could go up and down the stairs on my butt. There wasn't even a bathroom on the main floor. So every time I had to use the bathroom or I wanted to go to my room, it was up the stairs on my butt.

    Oh, and my parents had to bump me up and down the steps to get in and out of the house because he didn't want an unsightly ramp.
    OK, WTF???? It is bad enough when friends don;t get it, but your dad??
    T7-8 since Feb 2005

  9. #49
    Senior Member djrolling's Avatar
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    Quote Originally Posted by Shannon View Post
    I was 8 when I was injured. My bedroom was on the second floor of our house. My dad's solution was to have a wheelchair at the bottom of the stairs, and another one at the top. In the morning, he'd carry me down the stairs, at night he'd carry me up the stairs. I couldn't go to my room during the day. I quickly got sick of this, so one day when no one was paying attention, I drug myself up the stairs. Someone must have told my dad that letting me go up and down the stairs on my butt wasn't a good idea, because he decided to build an elevator. Building an elevator was a piece of cake for him. He did it entirely on his own. I remember thinking, why the heck didn't he build this sooner?

    I put scrape marks on the toilet, tub, sink, walls, doors, etc with my wheelchair. He hated that. I tried my best to not do it, but I couldn't help it. So he said he would build me my own bathroom. I thought, yay, my own bathroom! He built it in his goddamn shop. Cold, dark, cement floors, isolated from the rest of the house. And then he banished me from the regular bathroom.

    When I was 15 we moved. As I was being introduced to our new house, I said, "Where are you going to put the elevator?" He said that he wasn't going to put an elevator in because I was only going to be there for 3 more years and I could go up and down the stairs on my butt. There wasn't even a bathroom on the main floor. So every time I had to use the bathroom or I wanted to go to my room, it was up the stairs on my butt.

    Oh, and my parents had to bump me up and down the steps to get in and out of the house because he didn't want an unsightly ramp.
    WOW as if you did not have enough obstacles in your life your dad had to go and be one of them...And to tell you at 15 he expected you to be gone/out of there at 18...Wish you could have had a better dad...WOW

  10. #50
    Senior Member lynnifer's Avatar
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    We were lucky when I was 12 that we were in the middle of remodeling the kitchen/bathroom on an old farm house to already be bigger for a family of six, but I lost my bedroom upstairs and had to sleep in a bed in the dining room with no privacy until I moved out at 18. I lost the best room in the house with all the best furniture and got my brother's hand-me-downs. My sister and I used to have to share a bedroom until she moved out when I was 8 or so.

    A ramp was built in one afternoon - they were still finishing it up when I pulled in from the hospital. Since it was a small farming community, the same contractors who built the kitchen/bathroom built the ramp for $500 (all wood).

    For years I hated brushing my teeth to the side and reaching over to spit in the sink ... I'd always kink my back. Couldn't see the bottom of the kitchen sink either because the counter-top was too tall, lol.
    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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