HELP W/ TOLERANCE

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Suzanna

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Dec 24, 2005
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Merry Xmas, I am a young single mother that was recently diagnosed with ALS, I am hoping to connect with others with the same disease,as i feel very alone.
TOLERANCE;I have been recently diagnosed, I am a single mom who has always taken pride in being articulate and well presented, now because of my impaired speech people stop smiling when I talk, they talk over me to my young daughter as though I am invisable. the other day in Walmart the cashier, after i asked a question totally ignored me and asked my friend'does SHE want.......how will SHE be paying etc'.
I am not proud to say that I turned to my friend and referred to the cashier with some colorful words. Then cried when I got to the parking lot. I have traveled, attended University and now people treat me like I am mentally incompatent. How do I deal with these people? Do you have any ideas or suggestions as I don't need an assault charge, and it does not help my mood when I need to be a proper mother plus cope with the disease.
Thank you.
S.
 

TBear

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Oh Suzanna:

I'll bet you haven't had that before... first of all welcome to this little corner of the world. I'm saddened that you are here but hope that you find this place welcoming, enlightening and, many times zany!

Your story, unfortunately is not uncommon so you will have to develop some thick skin. Chances are you could tell these people that you have ALS or Lou Gehrigs disease (something that they might understand) but , if they are that ignorant they probably wouldn't get it anyway. Maybe you could try just telling them as best you can. It might work.

My personal favorites are the people who do talk to you , but since you can't or have difficulty responding, feel that they need to talk LOUDER to get their point across! Those in wheelchairs just get stared at! Most people are pretty good . So take heart!

Merry Christmas to you and your family, and try to carry on normally as best you can... an offbeat sense of humour will help out a lot... after that use a two by four!

T.
 

A Daughters Love

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Oct 8, 2005
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Hi Suzanna,
Merry Christmas! I think all you can do is have faith that not everyone will treat you like this. This disease teaches us so many different things, the list goes on forever. Take care and welcome to the group!
 

Al

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Hi Suzanna. First of all I must wonder at the number of people on the forum that are from Edmonton. Did you guys just get the internet? Just kidding and don't hit me with a 2x4. Seriously though there seems to be a lot of people posting from Edmonton. From what I have gathered there is a lot of awareness in your area but there is no excuse for plain ignorance. When I am in a checkout line etc. and am having trouble getting my money out I usually say as Tbear says Bear with me: I have a muscular illness and have a problem with my hands. I have not had anyone give me a hard time or look down on me after telling them what the situation is.
Having trouble with speech is entirely different but you should have your daughter or whoever is with you say that * she has an illness but she is not retarded* I mean no disrespect to anyone with a handicap. I am one of you so I know how you feel but sometimes bluntness is the only way to get through to some people. Some people just don't get it. If you say what I have just said it will be like hitting them with a 2x4. No assault charge and you will feel better. Sorry that you have to be here but welcome to the family. Al.
 

Theresa2004

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First by joining this forum, you are not alone by any stretch of the imagination. You will find a wealth of information, support and patience, along with a group with an intriguing sense of humour.

I agree with what TBear wrote regarding just telling them. As a side bar, T-Bear, when did your status get bumped to "gods gift'? You'll be battling it out with Al. I hope the professor doesn't let it go to your head :lol: (Seriously, it is wonderful you share your experiences :idea: )

I think when Al reads this, he will tell you a story, it's his to tell, not mine about several situations he has had when people saw he was having difficulty with his hands and how he reacted.

In your eyes, you know what is wrong. In other peoples eyes, they don't, and unfortunately perception is assumptions often made incorrectly. People don't know how to react.

Quite some time ago, our office had a representative come in to coach us on how to deal with various special needs situtations. Without that coaching, I know myself, I would not have had a clue. In some cases, I still don't. Point is, I doubt Walmart trains their staff. But Walmart isn't the culprit, it is ignorance. As a person who deals with the public, I am always afraid of offending someone perhaps I can't understand, or who is has a physical disability, but I draw on what I did learn and hope I am right.

If you scroll down you will see a posting about our Elaine who passed away several weeks ago. Several of us saw her three days before. Her speech was impaired, and you could see the frustration in her face as she tried to communicate to us. Eventually, she wrote it down on a napkin. I felt horrible for her struggle, and I felt embarrased I couldn't always understand what she was saying.

There are members of this forum who can give you suggestions how they handle issues of communication. I spent time with an autistic teenager, who with his caregiver, carried a small book of common questions, and needs, so whoever he met, could understand.

Perhaps if you have particular establishments you frequent on a regular basis, ie, Walmart, the pharmacy, grocery store you go to weekly, suggest to the management they bring ina specialist to train their staff, and teach them sensitivity. Then, for those who don't smile at you any more, educate them. You are not mentally incompetent; you are smart and bright. Teach them about ALS. This idea might be totally off the wall, but make up a wallet card with the facts about ALS. Next time they stare at you, or treat you without dignity, hand them one.
 

Theresa2004

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Apr 14, 2004
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292
as a post script, Al must have snuck in his response while I was trying to write mine, I didn't see it . If my comments seem out of sync, he beat me to the 'submit' button
 

hope

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Oct 1, 2005
Messages
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No matter where you go in this world some people have no patience for those who have physical or emotional struggles. They can be rude and very disrespectful. I have learned and have accepted that there will be those who are thoughtless and think that all people are the same or should be the same, they feel that we should just go through the cash and we should all do it a certain way. They look for the perfect shopper who just walks through does what is expected and is on their merry way. These are the kind of people who I feel sorry for because they do not get to know the many beautiful people in the world who may do things a little differently, whether it be a disability or just fear of going through stores, they do not take a moment to connect to the beauty of life. That beauty they are missing out on is the beauty of a person who is struggling but may be the most sincere, kind human being they have ever met. How sad that because they expect a certain behaviour they miss out on someone who probably can teach them many wonderful things in life. I believe they are unhappy in there own being and to open up and show respect and kindness is hard to do. So when I run into this kind of a problem I hold my head up and I keep on being me, because I like me and I tell myself that no matter what the struggle I will teach those who do not show understanding by just being me and it takes me a little longer to say what I have to say then they will see by how I behave that the respect I have for me will hopefully show them that they need to have that same respect for themself and take the time to show human kindness to another. Keep on being you who needs to change it is those who need to learn how to be with their fellow man. We all walk together in this world and it would be wonderful if along the way when we fall that those that are still walking on stop and take the time to walk with us even if the walk is not the way thier used to.

hope.
 

margeo55

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Nov 17, 2005
Messages
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hi Susanna welcome to the forum, i.m also from edmonton, people can be very rude at times but this is because they don't understand. we need to educate them sometimes its just not worth the extra effort, smile at them and wish them a happy day, that usually gets to them. keep on smiling
marianne
 
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