An open letter from SueM

Discussion in 'disABILITIES!' started by SueM in MN, Jun 22, 2007.

  1. SueM in MN

    SueM in MN combining the teacups with a roller coaster Moderator

    Aug 23, 1999
    Something that is a long read, but worth it....
    I have a link to a trip report in my signature you might be interested in and I copied it here:

    It is an old report, from 2006, so some attractions are not the same any more and some don't even exist. The writer was using a power wheelchair and was ventilator dependent. She has since died, but her writing skills and overall delight in life deserve to live on, which is why I kept the link in my signature.

    Even though you may not get much useful information from her trip report, you will get a lot of knowledge and enjoyment.
    Glittercat likes this.
  2. SueM in MN

    SueM in MN combining the teacups with a roller coaster Moderator

    Aug 23, 1999


    Most people are generally trying to post helpful information. Some have better skills at stating things in a helpful and tactful way than others.
    Some have more difficulty. The information is often helpful, but the delivery is off-putting or could be perceived as rude.
    Keep in mind also that writing only gives part of the message the person was trying to convey. Something that sounds 'snarky' or rude when you read it, might sound very different in person, with other clues to the meaning, like tone of voice and facial expression. Often, something that looks rude was actually an attempt at humor that went wrong.
    So, take the information for what it's worth and ignore the delivery or report the post if you feel it needs input from a Moderator.

    Please read over your post and think how others might interpret it before hitting the Post Reply button.
    You (the general you) might have good information to share, but the way the information is delivered may make others not read it at all or not be able to see the information because of the delivery.

    If you (the general you) think it might come across as rude or snarky, I can pretty much guarantee that others will think the same thing. You (general you) may be meaning something to be humorous, but it can come off MUCH differently to readers.
    So, think and edit before posting if there is any question regarding whether what is being posted might be rude or negative.
    lanejudy likes this.
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  4. SueM in MN

    SueM in MN combining the teacups with a roller coaster Moderator

    Aug 23, 1999
    People make choices and decisions all the time. For many people with disabilities, the 'easiest' and 'safest' choice would be to do nothing.
    Not leave home. Never take chances. Never live life.

    But, that's not what most people want. To take a quote from a character in Steel Magnolias,
    "I would rather have 30 minutes of wonderful than a lifetime of nothing special."

    Many of the people on this board are just trying to find a way to have their "30 minutes of wonderful".

    This board was created to give people information so they can make informed decisions and choices.
    So, that they can make the safest and best choices for themselves and their families.

    Some people take the information and decide that the 'cost' of this particular wonderful is more than they are willing to 'spend'. And, they end up not going.
    Others use the information to make things work for them, and choose to go, knowing there is some 'cost', but deciding that the 'choice' is worth the 'cost'.

    'Choice' is the important word. It's the person/family's choice to make.
    Would all of us make the same choice, given the same circumstances?

    Probably not, but it's not our choice to make.
    I have a Facebook friend whose daughter is on a ventilator. She has gotten mucous plugs multiple times, which clog the ventilator and stop her from being able to breathe. This makes her heart rate go down and unless they can get the mucus cleared and get her heart rate up, she will die. They just changed her advance directives to DNR, which means, one time (who knows how soon), they will not be able to bring her back and she will die.
    They are at WDW right now, realizing the risks and doing what they can to mitigate the risks.
    Would I choose the same?
    No. Never. I am not as brave as her and her mom.

    But, her child loves WDW and has a smile like the sun, so who am I to say that they can't/shouldn't go and experience the things that create that smile.

    There is a link in my signature to a trip report from a family who looked at the roses in life instead of the thorns. The writer of that trip report is dead now, but I am happy to say that she was able to get many '30 minutes of wonderful' in her life.
  5. ember303

    ember303 Mouseketeer

    Nov 20, 2011
    That momma is taking her baby to enjoy disney no matter what costs. To see her happy is probably worth any risks! Good for that momma! Thanks for sharing!

  6. docsoliday1

    docsoliday1 DIS Dad #834 Cubs, Dolphins and Disney fan forever

    Mar 12, 2008
    I realize this is an older thread, but very true. Culture does have a lot to do with it and that even goes for different regions of the same country. For instance, in some parts of the US, pop means soda. In the south, it's a coke whether it's actually a coke or not. ;-)

    I remember studying the differences when I was going to be stationed in the UK
    boot = footwear in US, trunk of a car in UK
    bonnet = headwear in US, hood of a car in UK
    garden = place where vegetables are grown in US, grass or shrubbery in UK
    fag = derogatory term for same gender attraction in US, cigarette in UK
    chips = thin sliced potatos in US, french fries in UK
    tube = part of an automobile wheel in the US, subway in the UK

    I know there are many more, just did these because a) I remember them and b) good sampling. (Mostly a) :tongue:
  7. SueM in MN

    SueM in MN combining the teacups with a roller coaster Moderator

    Aug 23, 1999
    Food for thought from Facebook......
    This came up on my Facebook feed and seems like good food for thought to Wish Merry Christmas and start the New Year.

    As I was pulling into work, I was following this car. The sign in the back window says, “Learning stick sorry for any delay.”

    Knowing this information, I was very patient with their slow shifting, and honestly they were doing pretty well for still learning. Then I asked myself a tough question: Would I have been just as patient if the sign hadn’t been there? I can almost definitely say no.

    We don’t know what someone is going through. We don’t wear signs that illustrate our personal struggles. You don’t see signs taped to people’s shirts that say, “Going through a divorce”, or “Lost a child”, or “Feeling depressed”, or “Diagnosed with cancer”.

    If we could read visually what those around us are going through we would definitely be nicer. But we shouldn’t have to see signs and have reasons to treat strangers with kindness. We should do it anyway, whether we know what is going on or not. Whether they deserve it or not.

    Let’s give everyone an extra dose of patience, kindness, and love. And have a Merry Christmas.
  8. MaryAnne220

    MaryAnne220 Earning My Ears

    Mar 13, 2009
    I just read this post, for the first time.
    And I cried, because we know Kaylie....and her mom, dad and sister....her Aunt is my best friend. I remember that phone call, I remember arranging my life for my children so I could drive my friend home(we live in NE). I remember holding these people in my arms....and I remember the butterflies....that found us all for months after...

    It's been almost 11 years....healing has come, but there are still tears....we still miss her.

    I just had to comment....Keep that family in your prayers still....there is still more healing needed.
    Mary Anne
    SueM in MN likes this.
  9. SueM in MN

    SueM in MN combining the teacups with a roller coaster Moderator

    Aug 23, 1999
    ((((Hugs)))) :butterfly :butterfly
    That was such a sad situation. We walked our dog past that house very often, but didn’t know the family.
    We live across the woods and across a pond from them.
    There were people walking all through the woods, police cars and helicopters that day. It was so sad.
    The information that came out later was that the family had arranged and prepared very well to prevent her from getting out of the house and wandering off, but she somehow got around all their precautions in the few minutes the mom was busy (as I recall, in the bathroom). Very sad.

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