[Big Valley]

Apart from this site I would say I really don't openly discuss details of my disability with people I know. My long term friends have of course asked questions and we have talked about things but other than my ex-g/f I was in a long term relationship with I don't reveal the dirty details of the SCI life. Friends of 8 years don't know about my leg bag usage or what is required of me to use the bathroom. I do this as sort of a need to know kind of information. I don't ask them the details of their bathroom habits.



While I can not feel my lower body they also do not know this. I still hook up ladies from time to time and I don't let them know that I don't actually feel the sex we have. If it turned into a relationship I would get into it but again I feel this doesn't need to be revealed.



If someone I didn't know very well was to start asking me questions I often just lie. I do as little as possible to be seen as handicapped and people I know will often say they forget I am. As a contrast I often find that is I am in the presence of other chair users all they want to talk about is handicapped stuff.

[gsp23]

For the most part I dont get into details with a lot of people either. With strangers that start asking questions, I give them the info to help the to understand basics and try not to be rude adding to any other fear or dislike of disabled people. Although I do resent it when you go out and people think its acceptable to say things like "so what happened to you" or "I would love to hear the story of what happened to you" when I have never met these people before. My boyfriend says I should say something cool like my parachute didnt open all the way and I was injured in a skydiving accident, but I havent yet started doing that. I will answer basic things like if a kid asks if I can feel my legs I answer truthfully.

As far as the more personal stuff, like bowel routines, sex, etc. I have talked to my boyfriend about most of it, but there are still things I keep to myself. I mean when I have a lot of nerve pain he doesnt need to keep hearing on certain days that it is a really bad day for example unless we were planning to do something and the excessive pain on that given day possibly affect that (normally I do my thing regarelss of pain, etc anyways though). A couple personal things I have talked to my mom about because she used to be a nurse and she is an underwriter for a life insurance company where there are othe doctors working with her. So if I am frustrated with a certain aspect of my life I tell her in hopes that she can offer some input or maybe run it by one of the docs she works with. The only reason she even runs things by them is because there is one doc she works with that comes around every 1-2 weeks and ever since I was in the hospital he asks her every time he sees her, how I am doing and asks if he can do anything to help.

Normally though, my friends, my sisters, other family, etc they dont know all these details. Heck on Easter weekend one of my aunts just asked me about the pants I was wearing (track pants) and asked if that was all I wore now (not being sarcastic but honestly wondering, she also has a friend who has some kind of degenerative neuro type SCI who has recently started using an electric chair). I answered that yes I needed to wear track or wind pants or some type of pant that had an elastic waist on it or a wide waiste like really baggy pants for example because of how I got dressed now. I could see the confusion on the face of a couple other aunts that were in the room so I briefly explained to them on how when I put my pants on how I put one arm underneat the knee and lifted my leg up while I pulled the pants up with the other hand and visa versa. I also explained that I needed some slippery material on my pants so I could pull myself up into my truck or get on/off chairs, couches, etc easily.

So yeah I would say that with a few minor exceptions this is pretty much a need to know basis. Now if my sister would come up to me and say something like "hey I heard about how people with certain injuries werent able to go to the bathroom normaly, is that something you need to deal with too?" If she was honestly just trying to understand I would answer her honestly. If she wasnt completly sincere or it was someone not very close to me then I would give probably some smart ass answer.

[Texaswheelz]

I'm the same, friends I graduated high school with, roomed in college with..etc, pretty much had no clue what I went through on a day to day basis. I've never asked them how they wipe their ass and they've never asked about any of my personal hygene and that's fine with me. My wife knows a limited amount and unless I break a arm and need her help then she knows all she needs to atm. I don't see any thing gained by telling more or trying to explain it to her and again i don't ask her how she wipes her ask, so she hasn't asked me what I do when i do it.

[Lucydog]

I rarely discuss any of these private issues with anyone who doesnt have personal experience of such. I just feel that I dont want to bore or burden anyone with my problems. On the other hand if people ask Im happy to give a brief overview of things. The quickest Ive been asked anything must be about 10 minutes into meeting a new colleague who said "So, can you feel your legs at all" after meeting me for the first time. I was taken aback a bit but we actually got on really well. I generally tell people I had an accident. I think its human nature for colleagues to be curious especially if you see someone on a daily basis. I try not to go into details as actually I dont want to discuss it most of the time, so they tend to assume wrongly it was a RTA. But that doesnt really bother me.

I feel it can be useful for ABs to have knowledge of our and the lives of other disabled people, but I get sick of the sound of my own voice. If Im not careful I feel as if Im talking about me, me , me which is the last thing I want as I dont feel very interesting. So thats why I started writing my blog. Its a way for me to talk at length about things without having to be discreet.So I feel able to discuss bowels and sex and all those topics we love but in a half anonymous way. It get things off my chest without me being a SCI bore!!

thanks
L

[wheeliebear75]

I guess it depends a lot on how the person is reacting to me 1st. I have had lots of different reactions from strangers. For the most part however I guess in a nut shell Tell the basics answer the generals, and avoid anything TMI I am incomplete and so usually people are a bit stumped by it (nothing they get, kinda sorta not so well). I give the wire with a short analogy. I do NOT go into dressing, bathing, bathroom, or sex. I personally am not comfy with those topics. Some of my closer friends know that I do not have very good bladder control, most of them have found out about the neuropathy, and hardly anybody knows what problems I may or may not have with regard to sex. I am multiply disabled so I get a lot of people making the asumption that I must be retarted and in a day program.....nope just not always a good idea for a legally-blind person to stear their chair in public/ crouded places.

[Big Valley]

By talking about your disability I meant with friends. Not strangers who as we all know can ask very personally things as their second sentence to you.



Now if my long term friends asked me straight out sometime, how do you ____? I would answer them truthfully. But they don't. I maintain the image of all that is wrong with me is my legs just don't move. As far as they know I still feel everything and everything works as it should. Surprises me most of them don't think this through but what ever.



When I was living with my ex-g/f years ago for about 4 years she knew all the details. But I didn't keep things like leg bags, caths, etc. in sight. Just like women keeping theirs "girly items" out of sight. We know it is there but it doesn't need to be flashed around.



I was just relating this to being around some disabled people who only seem to want to discuss handicapped things. Leaving their drain bags in open sight in public. Stuff like that. Similar to being around older people who only seem to talk about all the medical problems they are having. No one wants to hear that stuff so keep it to yourself.

[edlee]

Unfortunately, when meeting someone , the first thing they notice is the chair. Sad but true. My injury is a part of who I am. If someone, even a stranger, asks me a reasonable question, I will answer it as fully as I think they can handle. Less than reasonable questions are dealt with in a less than reasonable way.

Getting upset about someone asking about my situation doesn't seem appropriate. They are only trying to get to know me. How is that wrong? If you don't want people to notice you then hide. That line about wanting them to see the person not the chair is a load of b**l. The only way strangers will get to see beyond the chair is to have some understanding of what that chair entails. Then they can (if you aren't an insufferable ass) get to know who YOU really are. Not until then can they forget about what you no longer have.

I guess it comes down to the reason you aren't willing to discuss your position. If you are ashamed for some reason of being para or quad, then maybe I could see it.

It seems to me that the more the general population knows about sci, the easier it will be to get the access we need.

The more we can educate others, the more likely they will be to ignore the chair.

[Big Valley]

edlee, on Apr 17 2007, 05:44 PM, said:

Unfortunately, when meeting someone , the first thing they notice is the chair. Sad but true. My injury is a part of who I am. If someone, even a stranger, asks me a reasonable question, I will answer it as fully as I think they can handle. Less than reasonable questions are dealt with in a less than reasonable way.

Here is the way I think about it. For me it was not the most traumatic thing to ever happen to me. Strange but I almost right away in the hospital thought, "shit happens. Let's move on." This is not true for most people. For many it was the worst thing that ever happened to them. And to consistently be ask to relive the most traumatic thing in your life just for someone's curiosity is extremely bad manners.



If I see someone missing a finger or badly burned, sure I am curious. But I mind my manners and don't go right up to them and ask for the story. If you see a very fat person do you go right up to them or as they just go past you yell out, "why you so fat?" A better example of a traumatic event might be knowing that a certain woman has been raped. Would you ask them to tell you the story?



I will tell people I know what happened. It might just be the quick, "I was in a car wreak." Or if I knew them much longer the more detailed story. As we all know we get asked for our stories so many time. And we don't appreciate strangers making us tell it multiple times a week or even a day.

[ziggy]

I'm very open about my injury and things that come with it if anybody wants to know.The only subject i avoid is bowel stuff,but other than that,if someone asks i answer.I understand that people are curious and i don't feel that i have anything to hide.

[Slowlegs]

ziggy, on Apr 18 2007, 07:04 AM, said:

I'm very open about my injury and things that come with it if anybody wants to know.The only subject i avoid is bowel stuff,but other than that,if someone asks i answer.I understand that people are curious and i don't feel that i have anything to hide.

I agree, if someone asks and I know them I will answer pretty well all questions honestly. It is nothing to be ashamed of. If they ask a question and I avoid it I am sure people always go for the worst case scenario anyway so best to put them straight.

[Kwag_Myers]

I always tell people that they can ask me anything, just be ready to hear the answer.

[fatdave]

i have a burden of being obese, so people wrongly asume that im just too lazy to walk. friends that i havent seen in a while are courious and if they ask, i tell them. my other friends know what happend, and are cool with it.

My fiance is my care-giver, she nows all about the bathroom details, as do some of my family.

[knowthill]

IF you want to know something just asks and I have no problem getting as earthy as you can stand. But I do not volunteer the information at all. The stuff I go through is pretty gross to most people.

[StellaLAtella]

It completely depends on who is doing the asking. A long time friend of several years.........yeah, I'd be brutally honest. But a friend of say less than 5 years.........they don't need to know much. And, if someone pushes, I change the subject and ask them something intrusive about THEM!
Works for me.
Stella

[eleanorigby]

To be honest, I doubt most of my friends know much about how being in a wheelchair works. Like people said before, they don't really discuss their bathroom stuff with me, so I don't with them. My best friend knows, but only because my mom explained it all to her when I was first hurt. They do know that I use a shower bench because they've all been over to my house and one friend actually used it when she had a little (or maybe a lot) too much to drink, lol. Some of my friends know about sex issues, again this conversation was initiated after many drinks. My bowel program and cathing is something I would never feel comfortable discussing with anyone except my mom and only her because she was my care-giver for years before I was able to do it on my own. I have talked to friends about what happened to me and what I can feel, ect. I'm an incomplete so that's always a difficult question to answer (can you feel?), especially with little kids because they don't understand the fuzziness of the whole issue. I usually just say that it's like my legs have gone to sleep and I can feel things, but its like my lower half is wrapped up in cotton.

This post has been edited by eleanorigby: 29 August 2008 - 07:44 PM

[Big Valley]

eleanorigby, on Aug 29 2008, 02:43 PM, said:

with little kids because they don't understand the fuzziness of the whole issue. I usually just say that it's like my legs have gone to sleep and I can feel things, but its like my lower half is wrapped up in cotton.

I keep it short. The kids just want an answer to their question. They don't really care. Like if they asked how far the moon was. You could go into detail and try to be accurate or just say "real real far."

For little kids I say, "I my legs don't work very well." They can understand that and then go on with their childhood. I don't want to say hurt or broke them as not to scare them into thinking if they hurt their legs they will have to use a wheelchair.