Reeve Foundation Paralysis Community

Shan .... I relate, my husband and I are the same age, within 6 months of each other in fact.  And a receptionist ata doctor's office asked him if he'd like his mother to come back with him or not.  I nearly died on the spot. I'm very often referred to as his nurse too. 

Yeah.  Six months makes that mistake just silly.  There are at least a few years between us, but still, not conceivable.  Why do you think they assume that?  Are mom/children typical configurations?  Or do they somehow see an adult in a chair as youthful?  Do you have any funny one-liners that might gently correct them?  Or do you just ignore it?  I don't want to make waves for her, but the part that made me most uncomfortable is that I'm not the one that should have been addressed   She had the carry-on and boarding pass.  She seemed pretty cool with it, and I think the mom thing is a little funny, but I really thought it was rude to ignore her.  Maybe I am being too sensitive?

Trish,  I really like the way you just made it a conversation and asked him questions--especially funny ones--while filling out the paperwork. 

Hi Shan,

Glad you have joined the community!  Most of the time I don’t really know how to act or react.  Mainly I just ignore it unless I’m irritated and sort of speak my snide comments.  Generally it takes too much effort to try to explain the situation to someone. 

 

Here is another recent situation and I wonder what you guys think about this.  My husband was at Wal-Mart a couple of weeks ago with his nurse.  This very elderly lady, very worn looking with no teeth came up to him and just starting yacking and yacking to him.  Ultimately she ended up kissing him.  Finally my husband’s nurse had to say “well we better get on with our shopping.”  They met up with the lady again in the pet food isle where she pulled out her photos of her poodles to show my husband.  The nurse was telling me that my husband was so nice and just kept smiling at this old lady.  I know he was trying to be nice, but just because you are paralyzed and in a chair are you expected to graciously put up with this stuff?  My husband is in his mid forties, do you think she would have followed him around the store and kissed him had he been on his feet walking?  What makes people feel like they can treat disabled people this way when they would never consider doing that to an able-body grown man?  Is it that child-like thing again?  Just because they see someone in a chair that needs assistance, do people assume they have a child-like mentality and treat them this way.  I don’t really know but it sort of annoys me; I can’t image how it makes my husband feel.  Who wants to be kissed by a toothless old lady that picked you up at Wal-Mart?

 

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Trish

"Life isn't about waiting for the storm to pass...it's learning to dance in the rain."

Hmmm.  That sounds incredibly familiar--she has experienced similar elderly or unbalanced person targeting.  I would say, if he is like my girlfriend, that his magnetism is a triple pull:   1) he is probably kind to strangers--maybe more than is good for him, 2) looks "safe" to them, and 3) looks like he would be a good listener...i.e. can't get away from them easily.  I think that people who feel disenfranchised may be searching for human contact, and they probably like a person who looks friendly in a chair--or even walks with a cane.  I am trying to imagine who might have interacted with that woman all day.  I don't want unstable strangers approaching her, but I think the motivation isn't always unkind...and sometimes makes me very sad for our culture.  And, I think that there are a fair number of people out there who target with some shady motives, but she is pretty amazing at spotting jerks and people trying to scam her.  And yeah, it concerns me a little that she is not always great at trying to avoid or get away from those who are very down or maybe a little unstable.  Even when she doesn't really have the time or energy, she tends to stop and listen to them.  But that is just my perspective--other takes on the situation?  (Eileen, sjean, brightblue, Haiku?) 

 

One of my new goals is to gather some really clever one-liners and humorous strategies that can help in awkward situations.  My idea would be to help educate, remind the other person of her presence, and maintain face for everyone in the situation.  Trish, I like you and your husband's response to the tedium and ridiculousness of standard forms--the question on walking--a lot.

 

I am thinking I like the strategy of just conversing with her more before responding to people.  Or, in extreme cases, ignoring them briefly, while we talk...and then answering (or maybe she answers), might make the point in a kind way.  Not sure.  I am very sensitive that this is her world, and I don't want to offend or anger those she has to interact with, too.  On the other hand, if they could be kindly educated, then maybe the next person they don't understand will be treated more appropriately. 

 

All perspectives and thoughts are welcome to me, I really don't want to be another source of stress in these situations.  I am definitely in the learning stages, here. 

 

Shan

Trish-411:

Is it that child-like thing again?  Just because they see someone in a chair that needs assistance, do people assume they have a child-like mentality and treat them this way.  I don’t really know but it sort of annoys me; I can’t image how it makes my husband feel.  Who wants to be kissed by a toothless old lady that picked you up at Wal-Mart?

 

I don;t think it was that as much as that he was non threatening, and less likely to escape?  This doesn't seem to be in the category of "We'll see little Joey now" to me.  And maybe this woman has found that disabled people are more tolerant of her, and thus she approaches them, while she doesn;t approach others.

Shana, in reference to your Q, I have been thinking about this since I read this, and I think the reason I am a little more, tolerant (?) is a bit of "there but the grace of God go I".

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T 7-8 since 2005

You know, we get this alot too.  Mostly from older people and other disabled people.  In fact, I'm guilty of doing the same thing - I tend to start conversations with older and/or disabled people because I know how isolating it can be when the chair is so intimidating.  Adults don't want to make eye contact so much of the time, kids stare - which we acutally don't mind one bit if its an innocent 'wow' stare that is completely normal, not a you're a weirdo stare. 

 

I think whoever said the thing about being disenfranchised and reaching out to others in a similar situation because they are 'safer' is true.  At least I know in our case it is.  Sometimes it gets really old, but I honestly like the interactions for the most part.  My husband is INFITELY patient and will talk forever with someone.  I admire that about him (among many other things) - he is incredibly generous with his time.

 

But yeah, sometimes it really gets under my skin! :) 

I am the person in our household who gets the comments and questions. If I get one more, "is that a custom made thing on your arm" I think I might scream.

That being said, I always take the time, respond to folks and give them a moment of my time. It doesn't cost me anything and quite honestly if it makes the other persons day, then it makes my day. Too often in life we get busy, go on our way and fail to notice people we encounter on a daily basis. I try to think of the conversations as "Random acts of kindness". My kindness is giving back. Many years ago when I was first injured, I was extremely isolate. If I got out of the house 1 time a week, that was alot, more often than not it was 1 time a month. I lived on the second floor of an apartment building and had no way to get downstairs without being carried. I lived this way for a year. Sometimes those children staring and maybe asking questions would be the only person I might speak with for days on end.

I think that as humans we have a need for touch, conversation and compassion, a sense of knowing we belong. I try to be tolerant and to also take the extra step to smile, make eye contact and maybe say hello. I have yet to kiss a stranger though.

My kids and husband joke that I can talk to anyone, when we are in public it is a bit of a family joke. I remember the strangers whose words held me over for days and weeks....I hope my interactions do the same for someone else.

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Thank you,

Every day I wake up is a good one.
phf 59-08