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

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    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:
    http://www.disboards.com/threads/driving-6000-miles-for-the-magic-a-miracle-trip.1427306/

    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.
     
  2. SueM in MN

    SueM in MN combining the teacups with a roller coaster Moderator

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    REMINDER:

    FOR READERS:

    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.

    FOR POSTERS:
    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.
     
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  4. SueM in MN

    SueM in MN combining the teacups with a roller coaster Moderator

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    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.
     
    Dezign, BethCPTSD, maburke and 2 others like this.
  5. ember303

    ember303 Mouseketeer

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    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 fan forever

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    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

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    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

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    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
     
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  9. SueM in MN

    SueM in MN combining the teacups with a roller coaster Moderator

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    ((((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.
     
  10. chaoscent

    chaoscent <a href="http://www.wdwinfo.com/dis-sponsor/" targ

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    Sue - just read your first post of this thread.. I was happy you are still a moderator and sharing your knowledge. I got off of the boards for a while due to a variety of medical problems and the negativity. But I am back on today planning a family trip and looking for advice from this thread. I just wanted to say thank you from the bottom of my heart for all the past support, knowledge and advice. I know I don't post thank you enough, but I send people to this forums and this one in particular a lot. Take care and thanks, Penny
     
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  11. KellyHonos

    KellyHonos DisneyDivaxo

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    I know this is an older post, but it has aged well. The take-away message is timeless. I love my job but I also work in an environment that can be somewhat depressing at times. I think I hold Disney so close to my heart because it reminds me of simpler times where I didn't have many real concerns. Some people may not understand why I'm in my mid twenties and still visiting, but that's okay, because I know why--it's a break from reality. We are so often forced to "act our age" and "grow up". Just because fully grown adults enjoy Disney World does not mean that they don't pay their bills or take care of themselves, etc. I've always said that there's a major difference between being CHILDISH and being child-like. There is nothing wrong with being a child at heart and enjoying some carefree time when you're able to. And that's what is nice about the boards too; you can connect with people with the same interests as you and discuss things like this and other topics that other people just may not understand in your everyday life.
     
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  12. Dezign

    Dezign Earning My Ears

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    We are planning a large family trip in December 2019. In our group will be 4 first timers, including children that will 7, 6 and almost 3. There are other children that will be 13 and 9 and have been before. I'm the grandma. :love: ( And chief trip planner, head cook, and bottle washer. My field of expertise: herding cats--good thing! )

    I came to the disABILITIES board not because we needed advice; we do not have any challenges of the kind discussed here, but because I have been with my 13 and 7 year old DGC many times at WDW and know that over the years they have had questions about the scooters, as well as the "extra" attention those with challenges sometimes require. And although I explained as matter of factly as I could, and urged our DGC to practice understanding and patience, I know my 7 and 6 year olds will have questions (my 7 year old DGD in particular is not exactly the soul of patience) so I wanted to have a better understanding of the challenges facing our disABLED fellow park goers. I'm hoping by understanding this better myself, I can help them relate with empathy rather than impatience.

    Hey. Just in general, life practiced with an attitude of gratitude is a much happier life--and huffing about having to wait while ECVs are loaded is just too sad for words-- I hear the grousing at the bus stops and inwardly cringe with embarrassment for the complainers.

    And hey. Maybe there are people that take advantage and game the system. So? That's between them and God. As my little DGS says, "worry about your own back yard".

    So thank you, SueM in MN and everyone else that takes the time to put this info down for us all. Bless you to everyone that comes here seeking advice and information in dealing with the logistics of a disABILITY, seen or unseen, temporary or permanent. If people are unkind, understand that not all disabilities can be seen. Some of us suffer terribly from IUHS; Ignorance and Ungrateful Heart Syndrome. It can be recognized by the symptoms: General Huffiness, Foot Stomping, Eye Rolling, a face like this :mad: in the Happiest Place on Earth, and a general air of cynical self-entitlement.

    I am very glad Disney does all it can to make the parks accessible to everyone. Even, I suppose, those with IUHS. :flower1:
     
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  13. disneyseniors

    disneyseniors DIS Veteran

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    Sue, I wanted to say a big Thank YOU for helping me in the disabilities section. Your comments were full of common sense and appreciated.
    I hope you will stay on the boards and not let the negativity get to you. I think people are more upset these days with Disney in general, and it gets reflected on the boards.
    I would hope that the disabilities section would not reflect that side of things.
    Your presence on the boards have been an immense help to me and to others. :)
     
  14. chaoscent

    chaoscent <a href="http://www.wdwinfo.com/dis-sponsor/" targ

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    Dezign - wow, you just put in eloquent words exactly how I feel about these boards and most specifically, this thread. when I first started coming on the DIS I was able to navigate the parks with no problems. At the time, I was an administrator of a school for children with challenging behavior and developmental disabilities. Ergo, I decided to check out this thread. Since that time I am now retired and use a scooter. I continue to come to this thread for updated information. I am a DVC member and normally stay at Boardwalk. I stay there so I only have to get on a bus to go to Animal Kingdom. I have only been to Downtown Disney once since it became Disney Springs, again because I hate using the bus in my scooter. I cringe and apologize to those who have to wait while I get on the bus. So your post just made me smile. I am going to the D23 event in November. I am staying at the Boardwalk because I couldn't get in BLT. I am dreading using the bus to get to the Contemporary, but I don't want to miss any of the event. Hopefully people will be as understanding as you are. Thank you for making me smile, and Sue, thank you for this site. Penny
     
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  15. bababear_50

    bababear_50 DIS Veteran

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    Hi Penny
    For people who don't know *Chaoscent* Penny was a moderator down on the DIS SISign forum. I know myself and many people miss you so much.
    :love1: I often think about your kindness to everyone who visited the forum. :flower3:I hope you have a Magical Wonderful Holiday and am sending positive thoughts your way!
    STOP apologising to people--you are teaching them patience Hon!
    [​IMG]

    Miss You
    Hugs
    Mel:flower1:
     
    Last edited: Oct 8, 2018
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  16. chaoscent

    chaoscent <a href="http://www.wdwinfo.com/dis-sponsor/" targ

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    Miss you all also. I still lurk, mostly on this forum and the DISign forum. take care all.
     
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