60 replies to this topic

[daffodil]

Hello Everyone!

I just wanted to know from the caregivers / spouses... what are the most shocking / upsetting questions or comments you get from other people? How do you deal with it, emotionally and verbally? This is something that has been bothering me more than usual lately for some reason. I don't know if it's curiosity or ignorance on their part. Usually I try to keep an open mind and label it as curiosity, no matter how taboo. I have gotten MANY questions over the years and most of the time, I'm ok with it. However, over the last year or so I've been getting the following questions or comments....

1) How come you're not pushing him? Don't you think you should be? (As I met a "friend" in a mall)
2) Don't you feel that you're kind of obligated to stay with him? What happens if you fall out of love one day? Could you leave him? (old co-worker)
3) You do know that you're going to have to take care of him for the rest of his life... right? (from "a friend")
4) Don't you miss having a normal life? (from family)
5) You're still young yet... are you sure this is what you want? (from family)
6) Maybe it's not right for you to work and leave him alone by himself - what if something happens?

*Also very personal questions with regards to intercourse... not the mechanics per say... but things brought up with appeal, positions, incontinence.

I'm I being overly sensitive here? Or am I in my right to be upset? I'm trying SO VERY hard to be polite... any advice?

Thanks!

Daff

[mellowgator]

daff,

people can be such jerks. you are under no obligation to answer such rude questions. you stick to your guns and follow your heart and you'll be all right.



mellowgator

[Ratticis]

I suggest forget about politeness and be a crass rude asshole like me. It tends to kneecap future questions too.

But seriously, people are stupid and thats just sad. Sorry to hear people like that exist. Not surprised, just sorry.

[greybeard]

daffodil, on 20 May 2011 - 06:45 PM, said:

I'm trying SO VERY hard to be polite... any advice?

Yep. Stop being polite.

[Simba]

These kind of questions after you've been with him for years now already seem to be covering old ground really and the people involved should probably not be continuing to ask the same old same old. I often find when people are like that it tends to be their problem as they are being judgemental, applying pressure & opinions which are not asked for and really on matters that do not concern them.

I also find it rude when I get retarded questions like that and have gotten beyond the point of being polite & nice to such people an putting them in their place by telling them that it really is none of their concern what I choose to do with my life - at the end of the day the consequences of my own decisions only affect me so they have no right to step over the boundaries.

Some of the questions could be based out of concern (with family) but why have they not accepted the fact that you two are grown adults in a relationship together and have a right to be respected.

With my husband and I it has gone from asking to telling which has pushed us over the edge with many people as they feel they have the right to tell us what to do - if it ever gets to this extreme be sure to stand up for yourselves. Example 'you should leave him/her' well that is our decision alone and has nothing to do with anyone else. We try to be very firm & clear with where our personal boundaries lie in terms of what other people say and push these issues back onto them as they really are not our issues to have to deal with.

My all time favourite from other people is the constant reference that it makes their lives too hard knowing someone who is disabled and ill. Most AB people unless they have had personal experience with disability are completely and totally ignorant about what it's like - I guess that's what is good about this spouses forum as we can connect with others who are spouses/carers and discuss some of the things realted with that and SCI, although we are all in idividual circumstances some things will still be common themes and dealing with people with no knowledge tends to be one of the re-occuring ones in my life - I am sure it affects many.

It gets to be annoying as time goes on and tolerance level to this type of outside communication will tend to lower with the frequency of such statements. My advice would be to start questioning yourself who the comments are coming from and whether they are truly concerned or still just unable to accept the fact you are with someone who is mobility impaired.

Bottom line I guess for me is that if it upsets me I make it very clear to the person involved how such comments affect me as often I think they speak through ignorance and if they continue to take it on board I remove myself from their influence as ongoing it can do quite a lot of emotional harm.

Hope you find your own effective communication tactics and mechanisms that work to improve this situation over time. Wish you both well and hope that your family/friends are able to be a little more understanding, supportive in the right way & accepting of your relationship.

[snowqueeneh]

I had one woman ask straight up "So, does his dick still work?". I was mortified! But looking back I realize that this particular woman is truly messed up and is living a very disfunctional life. I think some people just don't know any better... and others are just crazy. I do understand what you're saying... it gets to me too. Somedays more than others. It's been 2.5 years for us and I think this is one of the harder things I am facing now. We cannot hide our problems like everyone else and some people take that as an open invitation to prod into our business. I can tell you that the next time someone comments about my husband I am going to put them in thier place right quick! I have settled into this life now, and I can finally focus on other issues, this being one of them. So... when you truly have had enough, I'm sure you too will find the right way to tell someone to mind thier own. Good luck to us all.

[Simba]

snowqueeneh, on 21 May 2011 - 01:35 AM, said:

I had one woman ask straight up "So, does his dick still work?". I was mortified! But looking back I realize that this particular woman is truly messed up and is living a very disfunctional life. I think some people just don't know any better... and others are just crazy. I do understand what you're saying... it gets to me too. Somedays more than others. It's been 2.5 years for us and I think this is one of the harder things I am facing now. We cannot hide our problems like everyone else and some people take that as an open invitation to prod into our business. I can tell you that the next time someone comments about my husband I am going to put them in thier place right quick! I have settled into this life now, and I can finally focus on other issues, this being one of them. So... when you truly have had enough, I'm sure you too will find the right way to tell someone to mind thier own. Good luck to us all.

I agree people's attitudes and comments continue to be the hardest challenge for both my husband and I to deal with. You will find your own voice too...

[Spinner]

I must give off a very unapproachable vibe because no one has ever asked me any of these questions! The worst thing I have ever experienced is servers asking me what he wants when we are out to eat. I usually just tell them to ask him. Once a young woman asked me if he was ok I responded that he is ok as far as I know. I asked her why she asked, she said "well he's in a wheelchair." That is the extent strangers have ever approached the two of us with rudeness. My family has never said a word to me about marrying a man with a disability neither have any friends.

[DannyR]

Next time someone asks if he is allright turn to him and say Honey are you all right this stranger feels the need to know that but doesn't know how to ask YOU!!

[qbounce]

Would it make a difference to you if a young child asked, "what happened to you?"
Why?
Most people are as clueless as children when it comes to SCI, and when someone asks you a question (aside from sexual ones, as most people already know that's rude), that's a perfectly opportune time to educate them on the subject and not scold them or come across as a bitter crip with a chip on his/ her shoulder.

After a SCI, we all need to relearn how to interact in society. It's up to us to reach out, one person at a time, and teach them that we still breath the same air, shop at the same markets, and do pretty much what we want regardless our disabilities.

And when we get approached by those we deem annoying or inappropriate, be it a religious zealot who feels the need to save you (my personal experience), or the crazies like Snowqueeneh dealt with, those are the ones to avoid. Not the people with harmless questions.

[Simba]

qbounce, on 21 May 2011 - 02:51 AM, said:

Would it make a difference to you if a young child asked, "what happened to you?"
Why?
Most people are as clueless as children when it comes to SCI, and when someone asks you a question (aside from sexual ones, as most people already know that's rude), that's a perfectly opportune time to educate them on the subject and not scold them or come across as a bitter crip with a chip on his/ her shoulder.

After a SCI, we all need to relearn how to interact in society. It's up to us to reach out, one person at a time, and teach them that we still breath the same air, shop at the same markets, and do pretty much what we want regardless our disabilities.

And when we get approached by those we deem annoying or inappropriate, be it a religious zealot who feels the need to save you (my personal experience), or the crazies like Snowqueeneh dealt with, those are the ones to avoid. Not the people with harmless questions.

Curious and innocent questions are fine and if an opportunity presents itself to educate someone about SCI by all means I belive an attempt should be made by more to do so - but when it boils down to it you can only educate someone if they are willing to learn.

You just reminded me of an attack in town by a religious zealot (kind of ironic because we also believe in God) who was adamamently stating my husband refused to allow himself to be healed by God - ridiculous really and we had a good laugh about it afterwards, however in order to protect others we did express our concerns about this public confrontational extremist religious behaviour as we were concerned that others would not have handled the situation as well and it could have ultimately really depressed another disabled person by implying that they choose to remain impaired.

I guess it is a question of being able to or learning to distinguish between curius harmless questions and damaging questions which infring too much on privacy & personal boundaries and may be hurtful. Each person has to decide their own boundaries as only they will know what is hurtful and what is harmless in their particular lives & situation. If you find something offensive I don't believe that 'scolding' is inappropriate as it makes the offender aware that they have crossed a line in appropriate behaviour and may prevent them from asking such questions of someone else in the future (much the same as teaching a child morally) - therefore also working for the greater benefit of the SCI community - and I refer here only to questions which are beyond the realms of what that person should be enquiring into.

We find it quite charming and touching when a person is genuinely making an effort to understand more about SCI in fact these moments are often joyous for us and we don't mind explaining things about SCI to someone that is interested and do so very willingly (these are rare moments for us as usually we find in our society people do not want to listen or know) - when children ask what happened to my husband it makes me smile because I wish a lot more adults could display the attitude and innocent curiosity of a child rather than passing judgement and making decision which they often do about something they don't really have any insight to.

[smg]

the first day she met my boyfriend, my mother asked "can he give me grandchildren". i wish i was joking.

Edited by smg, 21 May 2011 - 04:54 AM.

[Simba]

smg, on 21 May 2011 - 04:53 AM, said:

the first day she met my boyfriend, my mother asked "can he give me grandchildren". i wish i was joking.

That's terrible - a good example of an inappropriate question and one that is very hurtful in nature. My family were similar in their attitudes too - when it comes from people who are supposed to care it makes it even harder. I hope her perception has changed since then and if that is all she cares about then I am sorry but that seems a selfish thing to ask really.

My mother told me I should be thankful that she came to my wedding - we were both shocked - straight after the ceremony. I also wished she was joking but she wasn't. She has accepted our relationship more and more over time though as we have talked to her extensively about SCI and of late she is quite accepting.

[LeahC]

Some times people ask questions because they are worried you are not happy, especially when it comes to close friends and family.

[baldfatdad]

I don't remember the exact question, but years ago someone wrote Dear Abby the newspaper columnist about a situation like this. Her answer was to look the person right in the eyes and ask them: "Why would you ask such a rude question?"
Hasn't failed us yet and sometimes we race to give the answer.
Of course we do screw with people. I will grunt when I push the chair next to her or she will reach over for no reason and wipe my chin or nose. My son even gets in on it. He announces "Special person coming, move aside, special person." When we are working our way through a crowd.

[daffodil]

Thank you all for your kind words and advice! We don't mind when someone is truly interested in his SCI (how it happened, can he feel his legs, basic mechanic questions) - especially kids!!! I've seen him light up, explaining to kids and answering their questions - so cute! It's the adults and the personal questions and comments that get to me sometimes. When I mentioned the questions came from family... I certainly am NOT including my immediate family - they absolutely LOVE him!

On a brighter note....

As of this weekend... we are engaged!!! :-D He proposed to me at a really fancy restaurant... out of town... we were the only ones there as it was late and the owner kept the restaurant open just for us... SO romantic - I'm so excited... I'm still on cloud 9! LOL!

*Note... must update profile - lol*

Hope everyone had a fantastic weekend! Thanks again for all of your responses! I just need to be more open with people... or maybe I just need to grow a back bone ;-)

OMG - *smacks forehead* - so sorry - no pun intended - lol ^^^

[Simba]

Congratulations daffodil on your engagement.

That's fantastic news for both of you.

Am glad to hear that it's not immediate family too that's making those awkward comments. Trust me they sometimes can't be avoided and it is mainly ignorance from other people and either set them straight by educating them and if they don't want to learn then just ignore them or tell them to butt out.

When's the wedding planned for? it must be so exciting....

[daffodil]

Thanks for the Congrats! :-)

No set date yet... we both want to get things in order before we tie the knot... trying to get a house is #1... after that then we can start planning :-)

~Daff

[Simba]

See you changed your profile already too.

Is it hard to find a suitable house over there for disability?

[Smileyblue]

Congratulations on the upcoming nuptials! Enjoy every minute of this thrilling, loving, happy time!

Wish you both the best in your joint future.. ;-)

[loveaquad]

daffodil, on 28 May 2011 - 04:55 AM, said:

Thank you all for your kind words and advice! We don't mind when someone is truly interested in his SCI (how it happened, can he feel his legs, basic mechanic questions) - especially kids!!! I've seen him light up, explaining to kids and answering their questions - so cute! It's the adults and the personal questions and comments that get to me sometimes. When I mentioned the questions came from family... I certainly am NOT including my immediate family - they absolutely LOVE him!

On a brighter note....

As of this weekend... we are engaged!!! :-D He proposed to me at a really fancy restaurant... out of town... we were the only ones there as it was late and the owner kept the restaurant open just for us... SO romantic - I'm so excited... I'm still on cloud 9! LOL!

*Note... must update profile - lol*

Hope everyone had a fantastic weekend! Thanks again for all of your responses! I just need to be more open with people... or maybe I just need to grow a back bone ;-)

OMG - *smacks forehead* - so sorry - no pun intended - lol ^^^

Congratulations on your engagement! I wanted to let you know that my fiance and I will be living in London, ON after we get married in August. Where do you plan to live? My fiance has his own business remodeling and building homes accessible for the disabled. He is a C5 quad, and has a home that was built especially for him. I am not sure what sort of home you are looking into, but that is an option you could look into. Happy wedding planning! We have 2 months left, and we are so excited. This website has tons of good info about wheelchair weddings. That is actually how I happened to come upon this site, cause I was looking up that very thing. Have a super day!

[The Wife]

I think the stupidest questions my husband has been asked were by one of his first nurses, A, she was very sweet, but very young, and a bit of a moron.

My husband is quadriplegic after suffering a massive stroke, but hates his wheelchair, and prefers to lay on the couch while we're inside.

One day A arrived and brought him in from the barn before our daughter and I. She proceeded to try and put him on the couch by herself, even though he weighs over 200lbs and is 6'4", and she was maybe 90 lbs soaking wet and about 5' even.

Needless to say it didn't go well and when, K, our daughter, and I walked in just a few minutes later he was already crying in frustration as she pushed his face into the couch other and held his back out off the edge with one of his legs still strapped in the chair.

She was fired on the spot, the last straw of many for her, but still had the audacity to ask why we were firing her, as I applied ice to his, already, bruising ankle.

Some memorable A one-liners:

"Do you want to face the back of the couch or the front?" (Seriously?)
"Can you hold this for me?" (If he could we wouldn't need you...)
"Does it hurt when I press here?" (I would assume so since he just told you not to touch him there... She was very nearly fired for this.)

[Denna]

The most rudest thing that happened to me was from one of my closest friends talking to another of my closest friend. She had said to her that she couldn't see why my husband has sex with me cause it would be boring sense all I can do is lay there and not feel anything. This really hurt sense my husband and I had been going through some problems at the time and I was confiding in her about it.

[mcwriter]

Denna, on 29 June 2011 - 07:02 AM, said:

The most rudest thing that happened to me was from one of my closest friends talking to another of my closest friend. She had said to her that she couldn't see why my husband has sex with me cause it would be boring sense all I can do is lay there and not feel anything. This really hurt sense my husband and I had been going through some problems at the time and I was confiding in her about it.

When someone makes a comment like that it only shows that they know nothing about making love at all.

Your marriage belongs only to you two. Don't let outsiders become involved with you two. They try to give advice on what they know about a situation which is only a small part, scratching the surface with whatever you tell them, because that is all they have to work with. This is destructive to your marriage to involve friends, you are not married to them.

It sounds like you and your husband may have resolved the problem, so good for you.

Edited by mcwriter, 29 June 2011 - 01:56 PM.

[dangerousdave]

What you drinking ?

Sometimes I have forgotten !

[mcwriter]

We don't get strange or rude comments or questions at all, either. Then again, my husband says I can be scary.

What? Little ol' me?

[beachy327]

i often get "oh dear what have you done to your legs?" to which i reply " nothing, just put some jeans on them why?"
and another classic is "you look tall how did you used to be before your accident?" ...... my standard reply " 9ft 11" i find stupid answers answers to stupid questions the best way to shut them up, once i was asked why are you in a chair, i told them i broke my neck diving in a lake... oooh accident then? ...... no i replied i did it on purpose

[catmint]

beachy327, on 29 June 2011 - 04:04 PM, said:

i often get "oh dear what have you done to your legs?" to which i reply " nothing, just put some jeans on them why?"
and another classic is "you look tall how did you used to be before your accident?" ...... my standard reply " 9ft 11" i find stupid answers answers to stupid questions the best way to shut them up, once i was asked why are you in a chair, i told them i broke my neck diving in a lake... oooh accident then? ...... no i replied i did it on purpose

Priceless beachy

Reminds me of the time a 'friend' asked me "so how tall is your husband when he's laid out".

I said he's not a carpet ...I don't unroll him when we go to bed

[LeahC]

beachy327, on 29 June 2011 - 04:04 PM, said:

i often get "oh dear what have you done to your legs?" to which i reply " nothing, just put some jeans on them why?"
and another classic is "you look tall how did you used to be before your accident?" ...... my standard reply " 9ft 11" i find stupid answers answers to stupid questions the best way to shut them up, once i was asked why are you in a chair, i told them i broke my neck diving in a lake... oooh accident then? ...... no i replied i did it on purpose

Truely amazing :-D

[Snakeye]

What pisses me off is when folks assume anyone who can walk, stumble or shuffle a mere eight or ten feet with the use of a walker or canes, even if they are capable of accomplishing that feat only a few times daily, can't possibly have a spinal cord injury nor should they spend time in a wheelchair..."If you can walk why do you use a chair to get around?" and they have no idea what complete or incomplete means when it comes to this condition...I get tired of exsplaining...