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Thread: Being in a wheelchair makes one feel invisible

  1. #21
    Distinguished Community Member Sunshine's Avatar
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    I have been thinking of putting a small cloth sign on the back of my house R2D2 that says, “SurferGirl”. Course, only me and the friends see it, but i would smile if i see it.

    Don’t think I would do it on public chair. It screams.”Look at me! Look at me!” To strangers and people with bad intentions.


  2. #22
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Screen Shot 2019-01-20 at 5.39.43 PM.png


    ((((((Hugs to All)))))) ~

    We've had just about every imaginable experience with Jon and Michael in wheelchairs.

    People walking toward us, stopping and crossing the street to avoid us. Or refusing to give us the right of way, forcing us to maneuver around them. Massive amounts of staring, sometimes scorn, sometimes pity, sometimes just oblivious to our feelings.

    But we've also had wonderful experiences of accommodations at local restaurants and on our only vacation to Utah in 1993. There, tourists and staff at motels and other venues couldn't have been more caring or kind.

    People fear what they don't know. They also don't want to appear intimidating or curious, in case that might be construed as offensive to the person in the chair.

    I've found this to be a characteristic in many of my life's situations, especially with parental grief. People don't know what to say to a grieving parent, so they either say nothing or the wrong thing.

    Sometimes, the way people react to us depends upon our behavior. When I tell strangers our life story, they begin to crumble with sorrow or sadness for us. But by the time I've finished, they feel inspired and spiritually lifted. Everyone's life has traumas and tragedies, and however different they are from ours, we all share that in common.

    It doesn't matter whether we use our legs and feet, prosthetics, crutches and canes, a scooter, or a wheelchair. We're all moving.

    As for signs, I'm wearing one of Jon's old pre-ADA t-shirts tonight, with the universal symbol for wheelchair users and the words "Access=Equality."

    And one of Michael's classmates had a backpack on his wheelchair with the words: "Some parts are normal."

    We are not invisible, and we should never let anyone make us feel that we are. The more we rise above stigmas, the sooner they will be dispelled.

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  4. #23
    Distinguished Community Member Sunshine's Avatar
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    Rose, your post is so illuminating. You are eloquent, have your heart poured into it, I feel your presence in your post. I am saving it to keep coming back to it. Thank you for your words and your spirit.


  5. #24
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Sunshine)))))) ~

    Thank you so much. I'm grateful that my experiences are helpful to you. I'm positive that this is one of my purposes in life ~ to share the lessons I've learned along the way.

    Unfortunately, people, who use wheelchairs, have long been depicted in literature and film as angry, bitter, hostile, and depressed to the point of suicide. Similarly, as the mother of two children with severe disabilities, that stereotype has been applied to me.

    I've also been criticized for having G Tubes placed for my sons to allow them to have nutrition. To some, that seems like perpetuating a hopeless cause. My response to this criticism is: whether you eat with a fork, a spoon, pureed or via a G Tube, it's all food. It's sustenance, nutrition, and it doesn't matter how it's delivered. We all need and have a right to nutrition.

    No matter what challenges we confront, no one should make us feel "less than."

    Regardless of our condition, we are not our condition. We are all human beings with the same need to be loved and to love.

    Be who you are. Let no one else define you. Because you are wonderful.

    Love & Light



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  7. #25
    Distinguished Community Member SuzE-Q's Avatar
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    Such beautiful words and point of view, Rose.

    Sadly, wrought from such poor attitudes and experiences from others that you've endured.

    I wish we could have you read out what you wrote and make it a required video in school.

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  9. #26
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    Quote Originally Posted by Earth Mother 2 Angels View Post
    This quote is hidden because you are ignoring this member. Show Quote
    ((((((Sunshine)))))) ~

    Thank you so much. I'm grateful that my experiences are helpful to you. I'm positive that this is one of my purposes in life ~ to share the lessons I've learned along the way.

    Unfortunately, people, who use wheelchairs, have long been depicted in literature and film as angry, bitter, hostile, and depressed to the point of suicide. Similarly, as the mother of two children with severe disabilities, that stereotype has been applied to me.

    I've also been criticized for having G Tubes placed for my sons to allow them to have nutrition. To some, that seems like perpetuating a hopeless cause. My response to this criticism is: whether you eat with a fork, a spoon, pureed or via a G Tube, it's all food. It's sustenance, nutrition, and it doesn't matter how it's delivered. We all need and have a right to nutrition.

    No matter what challenges we confront, no one should make us feel "less than."

    Regardless of our condition, we are not our condition. We are all human beings with the same need to be loved and to love.

    Be who you are. Let no one else define you. Because you are wonderful.

    Love & Light



    Rose
    Rose, this beautiful post of yours is EXACTLY how I feel and it is EXACTLY why I make my films to break these stereotypes. Disabled people want to live! Jon clearly wants to live. You did the right thing, I assure you! Food is food. Jon's G Tube and Colostomy are the same as the Insulin my BF takes everyday in that it is necessary and life giving, as well as life saving. I'm SO SO sorry you have been criticized for simply providing basic needs! That's so horrible! Everybody deserves to have basic needs met. Everybody deserves a chance at life.

    What are your thoughts on the disability depiction in "The Upside" btw?

    Maybe I can make it into a video? ;) My videos/films have been shown in schools by instructors.
    Last edited by funnylegs4; 01-24-2019 at 09:50 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  11. #27
    Distinguished Community Member SuzE-Q's Avatar
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    We sure have talented, motivated people on here!

    I haven't seen The Upside, funnylegs, I am not a fan of Kevin Hart, on principle, and the movie has not received many positive reviews, so I probably won't watch it.

    I really admire your action-oriented approach: you act on inequities, you don't just complain about them!

    That is exactly the reason society evolves.

    I wish you well in your endeavors!
    Please Note that my posts may have been arbitrarily altered by a Moderator and may not reflect my original content.

    Per Mike Weins: "...the admin/mod team doesn't have to provide a forewarning/warning/mention about altering a members post. It doesn't matter if they fix a link, remove a link, fix a typo, or whatever...."

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  13. #28
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    Quote Originally Posted by SuzE-Q View Post
    This quote is hidden because you are ignoring this member. Show Quote
    We sure have talented, motivated people on here!

    I haven't seen The Upside, funnylegs, I am not a fan of Kevin Hart, on principle, and the movie has not received many positive reviews, so I probably won't watch it.

    I really admire your action-oriented approach: you act on inequities, you don't just complain about them!

    That is exactly the reason society evolves.

    I wish you well in your endeavors!
    Thank you so much! Your post completely made my day! I noticed RJ Mitte told some disabled people who criticized the casting in “The Upside” to essentially stop complaining on twitter and make something. I realize disability is complicated so not every disabled person can create, or even wants to, and I disagree with RJ on some other points, but I do notice that the loudest critics of disability representation tend to be non creators. Eventually I got so fed up with people sitting around complaining waiting for Hollywood to step up, and Hollywood being hypocritical about “diversity” that I simply said: “That’s it! I’m making my own content!” Therefore I highly support disabled and other minority creators as much as possible. I plan to continue to create. Its just a matter of when the next project is ready.

    Here’s a review of “The Upside” on that was posted youtube by a wheelchair user in case you are interested https://www.youtube.com/watch?v=gF7u5NwYLP4 that seems balanced and well thought out. “The Upside” definitely seems better than the horrid “Me Before You” but it does seem to tread old stereotypical plot points.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  15. #29
    Distinguished Community Member Sunshine's Avatar
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    https://www.nytimes.com/2019/01/25/s...gtype=Homepage

    Great article about Dylan Alcott, champ of R2D2 tennis at Australian Open, says he hated that people stared at him as a child because he was in a w/c. But now they stare at him because he is the para champ in tennis...
    Last edited by Sunshine; 01-26-2019 at 06:25 AM.

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