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Thread: CN Central: JUNE UPDATES!

  1. #21
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    Oh Rose! THANK YOU SO SO SO MUCH!!! Your compliments made my day! I’m so touched! When I get messages like your post I know I have done something right! Your words motivate me to continue making more films! I hope to write your beautiful stories for all to see. I don’t mind some characters being bitter or having bad attitudes if it is done correctly i.e realistically and while making it clear that the bitter ones are not the majority. I hate stereotypes because I have been stereotyped. I agree. A major reason I cast disabled actors is it comes across in a much more honest way because these actors live the experience they are playing out on screen. On my blog there is an interview I did where I talked about this in a bit more detail. Here’s the link http://cripvideoproductions.tumblr.c...pathways-media I also get to give disabled people work and something they can put on their resumes so future employers may be more interested in hiring them. Interestingly the movie “Best Years of Our Lives”(I think that’s the title) which was released in 1946, had a real life disabled wounded worrier in it so I don’t understand why they don’t do that in movies now with the talk of inclusion everywhere in 2016. I would love to work with wounded worriers if I had the chance. It would be my honor.
    Of course I would never, ever, ever condemn someone for committing suicide! I have the exact same problem with the movie that you do. It makes disability seem terrible. I don’t like that Jon’s doc classified him as Palliative because that means they think he is already dying which is awful.

    Like you, Mary Grace I was accepted for most of my life so it wasn’t until I met older disabled people who were born way before the ADA did I start to become aware. So I understand where your perspectives come from. I use to be the exact same way. I had to realize the opportunity I have now was hard fought. Thank you to Rose for fighting for these rights!

    Amen to that Tamie! Especially the part about Tyler not being a puppy! Thanks so much! Tyler is loved and wanted!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  2. #22
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Tamie)))))) ~

    AMEN!

    Not having seen MBY nor read the book, I'm guessing that the story doesn't include the main character's struggle with obtaining health care, or services and supplies. He could afford to hire a private caregiver (and a financial assistant? or an assistant who handled his financial/legal affairs?). He could also afford to fly to another country, where assisted suicide was legal.

    This is where there is a significant cognitive dissonance between MBY and reality.

    We live in a culture/society, where "heroes" are athletes, rock stars, actors/actresses, race car drivers, etc. So, anything less than perfect is looked upon with disdain. That is why the general public might view MBY with the "better dead than disabled" concept already embedded in their thought processes.

    We need honest films about disabilities, about REAL HEROES, with actors/actresses, who have disabilities. We need to make movies revealing how difficult it is for people with disabilities to receive the care and services they need, and how they are constantly fighting The System, and disinterested physicians, who just throw up their hands and scratch their heads.

    Too many people think that persons with disabilities are living off the dole. No distinction is made between those, who can, and those who cannot, work. They refer to programs like IHSS and Regional Center as "welfare."

    There is tremendous ignorance among the general population about people with disabilities, because people with disabilities are the Forgotten Minority. The last to be mentioned in a string of minorities, if at all. The last to receive services, the first to receive budget cuts to those services. Sometimes, they are the least able to fight for themselves. Like Jon and Michael, and Tyler, and Kathleen.

    We need to see books and movies about these realities to wake up the able-bodied public, who thinks that people with disabilities are miserable and want to be dead. In thinking this way, it justifies their distaste for paying taxes to support the services and programs for people with disabilities.

    If I had time, I would write at least one book about my boys. And then a dozen other books about all of the children and parents I've met on my journey with my boys. But, alas and alack, I don't have time, and I'm getting older by the second.

    Meanwhile ... Back to Updates ~

    Tamie ~ how is Tyler? Are you getting positive results with the indwelling catheter?

    And everyone else ~ please check in with your updates ~

    Love & Light,

    Rose
    Mom to Jon, 48, (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 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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  4. #23
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    Hi Everyone!
    Sorry I'm late to this update thread. I'm quite busy recently - selling our house and moving to the country but still close to Nick, travelling abroad later today, writing a new book, etc. Life is good :) I have been worried about this film MBY - like others, I was very concerned about the message it sends relating to the value of a life of someone with disabilities. I've been posting online articles about this film on facebook - it's a dangerous precedent for pwd. for sure. I'm part of this initiative in Canada http://www.vps-npv.ca/. The fact is, most Canadians do not have access to palliative care and not to mention appropriate home supports for disability and illness. So 'suffering' can often be a result of lack of support and a reasonable choice becomes assisting suicide. This is wrong. Why oh why isn't there proper depiction of people with disabilities getting on with their lives in film? We need more of THAT! It's lovely to hear your voices again here at CN - I promise to drop in more often! xo
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


  5. #24
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((funnylegs4)))))) ~

    I hope that you understand how important the work you are doing is, how it is impacting the lives of so many people with disabilities, and helping to destroy the stereotypes, which we all loathe. Your work is truly important, and I support you 100% all the way in your endeavors.

    Everything I did these past 46 years for my children, I also did for you, and for all of the children here on CN and around our country. What I learned from fighting for my boys allowed me to teach other parents how to advocate for their children.

    I was an organizer. I spoke in front of school boards, rallies, administrative law judges, school officials, and every state and local agency knew my name, every governor, every county supervisor, every executive director of every agency knew who I was. I was interviewed by major newspapers and local TV news. My boys were at the forefront of the movement. I worried that I might be exploiting them, until I realized that this was their fight, and they are soldiers carrying the banner for civil rights.

    I linked arms with many other parents, and we waged the battle. We fought so that today's parents wouldn't have to fight. And yet, here we are, and today's parents have to fight just as hard and long as we did.

    I would love to write the script for that movie. It would tell the history of how exhausted, frustrated parents battered our legislators to pass the laws in place now. We would not be denied.

    It takes determination to fight discrimination.

    So, you keep doing your important work, funnylegs4, and you make your mark in the world. I have complete faith in you that you will succeed.

    Love & Light,

    Rose
    Mom to Jon, 48, (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 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  6. #25
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    ((((((Donna)))))) ~

    Thank you for taking time out of your extremely busy schedule to stop by and share your thoughts. I wish that I could read your Facebook posts, as I'm certain you share great insight on the MBY topic.

    I'm so surprised that Canada doesn't offer Palliative Care and home care. I'm so glad that you are part of the VPS initiative. Perhaps with your new Prime Minister, things will change and catch up to the 21st century?

    Praying that your home sells quickly, for health for you and your family, and for safe travels.

    Love & Light,

    Rose
    Mom to Jon, 48, (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 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  7. #26
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    Hi again everyone! Funnylegs, check this out: With so much news generated by ME BEFORE YOU and other important disability events and issues, here is an opportunity for budding journalists with disabilities to apply for the 2nd Annual CBS News/Lights! Camera! Access! 2.0 Internship for college students with disabilities with CBS News in NYC. Applications due Tuesday, June 14- Thanks CUNY for coordinating.

    CUNY LEADS - Central Office of Student Affairs (COSA) - CUNY
    CUNY LEADS.
    CUNY.EDU|BY THE CITY UNIVERSITY OF NEW YORK
    Rose, we have palliative care and home supports, just not enough and it's patchy geographically. It's not a right, but assisting dying is. sigh. xo
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


  8. #27

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    There was a protest about Me Before You in my city last night. I didn't go, partly cos I have to be a bit careful working in the public service and getting involved in such things. But local media reported on it which was good. There are protests going on in Australia at the moment too. I feel such a movement is long overdue, so maybe we can thank the movie for something.

    Exciting happenings this week. The annual conference on the Convention on the Rights of Persons with Disabilities is at the UN in New York this week. Some of my colleagues are there. This year is particularly exciting because elections were held for the CRPD Committee - the international monitoring body that oversees implementation of the convention - and NZ had a nominee, who got elected! First person with a learning disability on any UN Committee anywhere in the world. With NZ's former PM running for Secretary General, I am a very proud Kiwi.
    And excited.... hoping to get to go to the conference next year. Watch out USA!
    Enjoying the excitements of life. Looking forward to what's to come! What a ride!

  9. #28
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    Donna, thank you so much! I saw that Internship info through a listserv I receive via email. I thought about it for sure! I don’t consider myself a journalist personally at this point in my life. I’m simply a creator. It’s really awful that things are so patchy in your country and it does disturb me in a number of ways that assisting dying is a right. Thank you for being part of that initiative! I agree that “Me Before You” is dangerous. I recently saw a thread on a video site where a person was talking about “Me Before You” and the commenter said quote
    “If I ended up like Will, I would want to be put to death immediately too because I wouldn’t be worth crap like that. And if my wife were paralyzed I would put her to death as a act of true love,”
    I was like WOW! I felt so heartbroken that the commenter thought he would be worthless as a disabled person. And would even want his wife killed in assisted suicide. That type of mentality needs to be ended IMMEDIATELY!

    CPchick, I’m thrilled that there are protests going on! The UN news is certainly exciting!

    Rose, thank you ever so much! I feel so honored that you think my work is so vitally important!! What you wrote to Tamie is exactly what I’m trying to do, show disability as part of regular life,show disabled people working,being loved, show disabled actors and disabled bodies as beautiful! Many times in my life I have had people assume I am on SSD or SSI etc. I would never condemn or judge those who need these programs but I’m highly insulted by the assumption that I can not work at all. I work and I enjoy it. My teacher with the stroke works, the people in my films work. The disabled people I know who are gainfully employed are highly driven and motivated. They always go 80 miles per hour and never let anything stop them. I'v even heard of people who are almost completely paralyzed working. I know unemployement is higher for the disabled and if more people realized we wanted to work this would change and then disabled people would have more money and therefore more resources available to them. I think it is great you were such a huge activist! Have you ever seen the movie “The Brooke Ellison Story”? It’s a true story and while unfortunately the disabled character is played by an able bodied actress, it does show a good amount of the struggle for Brooke to return to her community with proper care needs and accessibility after being hit by a car and how doctors and school boards originally set almost no expectations for her. I wouldn’t say we are completely a forgotten minority anymore but there is a lot of work ahead. We are almost never mentioned in political campaigns. You really should write a book, even if you just write 2 sentences per month or something like that you would end up with a book in no time! Try at least, if nothing else! That’s how I ended up writing films!

    On a separate totally unrelated note, somebody who has dizzy spells like my teacher used to told me the eye movement he had during his dizzy spells is called “Saccades” It was such a relief to finally have a name for that weird almost seizure like thing his eyes used to do. Her description was exactly what I saw happen to him back in December.
    I also should be around more now because my schedule has lightened up.
    Last edited by funnylegs4; 06-16-2016 at 08:49 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  10. #29
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    In regards to my posts about Me Before You: I finally got to see*“Finding Dory” all the way through and it is a GREAT way to represent disability. Dory is very obviously disabled and the film shows that disability comes with BOTH struggles and joys and the message is*“There is always another way to do something” which has been my motto for CP all my life! Finally the media gets it right! Finding Dory is the COMPLETE OPPOSITE OF Me Before You and does everything right that Me Before You got horribly wrong! Finding Dory has 3 disabled characters in it! Finding Dory is just as touching and well animated as the original Finding Nemo! Nemo is even cuter in this movie! WATCH IT!*
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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