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Thread: "Speechless:" Prime Time TV Show ~ Teen with CP and His Family

  1. #31
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    ((((((funnylegs4)))))) ~

    As my sons' caregiver for going on 47 years, I understand caregiver burnout extremely well. I've had more than my share of moments curled up in a corner sobbing and mumbling, "I don't know how much longer I can do this," or "I don't know how much more I can handle/take." Especially when I was a single Mother, life was overwhelming. It still is.

    When my boys were young, we used respite services, and when I was a single Mom, my boys spent every other weekend with their bio-sperm donor (as he is now named) and his wife, when they were around. I was able to have a semblance of a social life, and I even dated. I know how important those times of "just being" are for any parent, but particularly for a parent of a child with special needs or a medical condition/terminal illness.

    My objection to this episode is that JJ's family specifically chose a venue, which didn't require any thought about accessibility. In other words, "Let's do something JJ can't do!" That's my emotional reaction to their choice.

    Maya (Mom) is an ardent activist, so to me this is out of character. Any time I've ever gone anywhere without my children, I've noticed accessibility of the location/venue.

    Example: I attended a concert in the 80s with a date (meaning the boys didn't come with us), and I noticed that w/c seating was in the last row on the farthest side of the concert hall. No seats for attendants to the w/c users. On our way out after the concert, I stopped and spoke to the w/c patrons about their seating. They explained that they saw none of the concert, because everyone in front of them stood through the entire 2 hours. I told them that I would advocate for a change in their w/c seating, which I did. A few years later, the venue was completely revamped, and w/c seating was located closer to the stage. I didn't do that alone; many other advocates voiced their concerns to the owners.

    I completely get what you're saying about JJ wanting to have an attendant rather than his family, and since his parents are a bit off the grid, that's even more understandable. And that's fine, of course. I tried to offer those opportunities to my boys as much as possible. Jon even went to a weekend Boy Scout camp out. Came home with mosquito bites all over his body. He was sick for weeks. That was the last time we tried that.

    I guess the way it was handled is the problem with this story line. I'm just not happy with the course Speechless is taking.

    Let's imagine that we are typical, average viewers, who do not have a family member with a disabling condition, or may only know a distant relative or casual friend, who does have a family member with a disabling condition. Basically, we are clueless about the challenges of having a disability and caring for someone, who has a disability. We are not privy to the day to day activities, the obstacles of something as simple as going to the bathroom or taking a bath or crossing a street.

    Now ... if we are that viewer, what is our take away from "Speechless" after this 4th episode?

    Here's my answer, if I'm that viewer:

    1. JJ is a burden to his family.

    2. JJ's mother is overwrought, aggressive, snarky, intimidating, and stressed out. Possibly unstable.

    3. Dad is apparently unemployed, and he likes to collect junk.

    4. The other 2 children are struggling to compete for their parents' attention, while trying not to blame JJ for needing more care than they do.

    5. It's okay to tie your son in his w/c to a goal post and lie that the opposing team are the perpetrators.

    6. A family outing, without JJ, at a place, where even if JJ wanted to go, he couldn't, is fine.

    7. Taking your kids to a paintballing place, letting them pretend to kill people, is also fine.

    8. A question: Are all families with special needs kids like this? Quirky? Odd? Obnoxious? Scavengers? Calling themselves "Idiots?"

    If we hope to change how we are regarded in society, these are the things we should be thinking about. How does "Speechless" inform people, who have no idea what having a disability entails? What are those people thinking now about us/our families?

    "Speechless" isn't doing us any favors. That's my take-away right now.

    Love & Light,

    Rose

    PS ~ Thank you for your compliment that I have done well for my boys. I have regrets, and I would change things if I could, but I have always done the best that I can with whatever I have had to work with ~ and that was often practically nothing.
    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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  3. #32
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((funnylegs4)))))) ~

    As my sons' caregiver for going on 47 years, I understand caregiver burnout extremely well. I've had more than my share of moments curled up in a corner sobbing and mumbling, "I don't know how much longer I can do this," or "I don't know how much more I can handle/take." Especially when I was a single Mother, life was overwhelming. It still is.

    When my boys were young, we used respite services, and when I was a single Mom, my boys spent every other weekend with their bio-sperm donor (as he is now named) and his wife, when they were around. I was able to have a semblance of a social life, and I even dated. I know how important those times of "just being" are for any parent, but particularly for a parent of a child with special needs or a medical condition/terminal illness.

    My objection to this episode is that JJ's family specifically chose a venue, which didn't require any thought about accessibility. In other words, "Let's do something JJ can't do!" That's my emotional reaction to their choice.

    Maya (Mom) is an ardent activist, so to me this is out of character. Any time I've ever gone anywhere without my children, I've noticed accessibility of the location/venue.

    Example: I attended a concert in the 80s with a date (meaning the boys didn't come with us), and I noticed that w/c seating was in the last row on the farthest side of the concert hall. No seats for attendants to the w/c users. On our way out after the concert, I stopped and spoke to the w/c patrons about their seating. They explained that they saw none of the concert, because everyone in front of them stood through the entire 2 hours. I told them that I would advocate for a change in their w/c seating, which I did. A few years later, the venue was completely revamped, and w/c seating was located closer to the stage. I didn't do that alone; many other advocates voiced their concerns to the owners.

    I completely get what you're saying about JJ wanting to have an attendant rather than his family, and since his parents are a bit off the grid, that's even more understandable. And that's fine, of course. I tried to offer those opportunities to my boys as much as possible. Jon even went to a weekend Boy Scout camp out. Came home with mosquito bites all over his body. He was sick for weeks. That was the last time we tried that.

    I guess the way it was handled is the problem with this story line. I'm just not happy with the course Speechless is taking.

    Let's imagine that we are typical, average viewers, who do not have a family member with a disabling condition, or may only know a distant relative or casual friend, who does have a family member with a disabling condition. Basically, we are clueless about the challenges of having a disability and caring for someone, who has a disability. We are not privy to the day to day activities, the obstacles of something as simple as going to the bathroom or taking a bath or crossing a street.

    Now ... if we are that viewer, what is our take away from "Speechless" after this 4th episode?

    Here's my answer, if I'm that viewer:

    1. JJ is a burden to his family.

    2. JJ's mother is overwrought, aggressive, snarky, intimidating, and stressed out. Possibly unstable.

    3. Dad is apparently unemployed, and he likes to collect junk.

    4. The other 2 children are struggling to compete for their parents' attention, while trying not to blame JJ for needing more care than they do.

    5. It's okay to tie your son in his w/c to a goal post and lie that the opposing team are the perpetrators.

    6. A family outing, without JJ, at a place, where even if JJ wanted to go, he couldn't, is fine.

    7. Taking your kids to a paintballing place, letting them pretend to kill people, is also fine.

    8. A question: Are all families with special needs kids like this? Quirky? Odd? Obnoxious? Scavengers? Calling themselves "Idiots?"

    If we hope to change how we are regarded in society, these are the things we should be thinking about. How does "Speechless" inform people, who have no idea what having a disability entails? What are those people thinking now about us/our families?

    "Speechless" isn't doing us any favors. That's my take-away right now.

    Love & Light,

    Rose

    PS ~ Thank you for your compliment that I have done well for my boys. I have regrets, and I would change things if I could, but I have always done the best that I can with whatever I have had to work with ~ and that was often practically nothing.
    Thank you Rose! You're welcome! I completely agree with your lists! Spot on! Even when I saw the first trailer I knew the "run of the mil" non disabled viewer would not "get it" so to speak because of how the show was marketed and executed. I wanted to like this show but I almost don't want to see the rest of the season. The show is saying "disabled people are inconveniences and burdens who screw up family life" and that is NOT true!! My whole mission has been to debunk the idea that the disabled are burdens! The story structure of the show and its messages is a mess! My main beef with this show is the writing. I suppose I will have to keep writing films to undo the damage. Maya the mom is hypocritical. However despite the crappy writing some of the acting is still rather decent especially the guy who plays JJ in his expressions. You live in the U.S right? If so was the revamp before the ADA passed? I hope "Speechless" improves somehow. I'm disappointed when our media portrays the disabled this way since other countries like India and Japan try to follow our example of disability rights and I don't want people in those countries getting the message that disabled are less or burdens.
    You are a wonderful selfless mom and I'm glad your boys had opportunities for independence. Was it the bites themselves that made him sick?
    Last edited by funnylegs4; 10-16-2016 at 10:17 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  4. #33
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    So again I have not watched this show so I hope you don't mind me adding my 2 cents anyway. I've read all your reviews and not sure if i want to spend my time watching it it may just make me angry.
    I can tell you about our family with a child with many special needs and complex medical issues. It never ocured to me to just do something with my older 2 without Kathleen. Sometimes it just happened because they all have different interests. Ot they went with a friends family. BUT we never just excluded her and felt like we NEEDED a break. We just went and figured out how to include her when we got there. I have to say that most people would bend over backwards to make things accessible as best they could, and if it wasn't quite perfect we would "wing it" At least we were together. An example might be a ride was not appropriate for her but for my older 2. No big deal that she skipped that ride. But also it worked the same way for my other 2 children they may not want a certain ride so they skipped it. That's how a family works special needs or not. They all have different interests. I'm against the paint ball but if my other 2 wanted to do something that Kathleen didn't we would either divide and conquer dad take 2 and me take Kathleen or Kathleen would go and watch. We had over a year that I didn't know when we left the house if Kathleen would have a bad accident with her lack or bowel control. BUT we never skipped things or left her out because of it. I tried my best to keep life as normal as possible. It meant packing a lot of stuff, clothes wipes pads etc...We have never even had babysitters when my kids were small except for family for a wedding or funeral. I do have to add that lots of typical families these days do NOT do things together as families and maybe that's the difference in the show. When my kids were growing up parents got together and the kids were not a part of it. These adults did not stay our friends. We did find families that did things as a family these became long time friends. I see so many parents that "need a break" from the kids in general. We've had some really difficult times but a break from Kathleen was not what we needed. I see the hypocrisy in the mom in going to great lengths to make sure everyone around her include her son yet it seems she doesn't. I'm not sure what the whole tying him to the goal post was but OMG that sounds degrading!! Still not sure if I can watch this... What network is this on I may see if it's On demand.......I hope you don't mind my 2 cents based only on your reviews...
    Mary Grace

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  6. #34
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((funnylegs4)))))) ~

    Yes, the concert venue was revamped, before the ADA passed in 1990. But even today, many public places have yet to provide 100% accessibility.

    Yes, the bites caused Jon to be sick, with fever and pain. He was literally covered. All of the other Boy Scouts and the adults had used repellent. They ran out by the time it was Jon's turn. Poor guy ~ he really suffered.

    I agree with you that the writing is subpar in "Speechless," but I also feel that the story telling is inaccurate. The creator/writer of the show has a brother, who has CP, so unless these were his experiences growing up in his family, I'm surprised by his portrayal of this family. Perhaps this is his reality.

    As I said, I'm going to keep watching it, because I don't feel that I can criticize or praise it, if I don't watch it. I just keep hoping that it will improve. And hoping it doesn't get worse.

    ((((((Mary Grace)))))) ~

    Your opinions are welcome always, of course! I imagine that you're getting the gist of the story, based upon our reviews. And we're likely biasing you with our reviews, so that's not fair to you as a viewer, if you decide to watch it.

    You can watch previous episodes on line:

    http://abc.go.com/shows/speechless

    The videos "open up" one week after an episode airs. Otherwise you can watch, if you can find your cable/TV provider on their list. New episodes air on Wednesdays at 8:30 p.m on ABC.

    Thank you for sharing your insight about your family. If only every family could be as connected and functional as your family is. It truly is a balancing act to put each child first and ensure that each child knows how loved and treasured s/he is. You've clearly done that seamlessly, Mary Grace, and your children are proof of that.

    I hear you about packing up half the house to take with you! I had a "go to bag" in our car/van with extra clothes, diapers, meds, paper towels, juice boxes, fruit cups, spoons, wipes, etc. We were always prepared!

    I just read today that ABC has picked up "Speechless" for the rest of this Season. I'm sure it's benefiting from its time slot and the carryover of audiences from the preceding and following shows. I just wonder what viewers are thinking about it.

    I'll try to watch tomorrow night, but we've got the Debate and the Dodgers' playoffs. So, I may just spend the season lagging behind by a week and watch it on line on ABC, when it's free.

    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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  8. #35
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    I watched about 15 minutes of the first show and decline to watch any more. It was pretty obvious to me what direction this show was taking. Hollywood wouldn't know how to put on a class act to save their souls. Nor do they care to. Sooner or later JJ is going to be the butt of the characters off color jokes, get sexualized, and minimalized to the point he is unrecognizable. A true portrayal of a special needs family's daily routine would be too hard for the general public to relate to and certainly not entertaining enough to get high ratings. Bottom line, not filthy, not racial, not full of skimpy dressed bimbos, no violence, no dirty jokes or sexual inuendos, no show. No great surprise.
    grandmother of Tyler (22): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

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  10. #36
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    Hi apparently episode 5 does not air this week. It airs Wed Oct 26 2016 17:30:00 ..
    So my next review will be after that.

    Rose, I never said I would not watch anymore. I said I almost don't want to. It's still cool that you got a revamp before the ADA! You go! Yes I know places are not fully accessible. Why do you think I still hate navigating public transit! I'm so sorry Jon got sick. They should have given Jon bug repellent first. The storytelling is part of the writing in my opinion. Episode 1 and Episode 2 apparently have the same writer. The other 3 episodes have different writers. Just because somebody has personal experience with something does not always mean they can write it. There's also a tendency to amp up the drama in these situations. I saw a blog post about "Steel Magnolias" where a lot of diabetics felt Shelby's low blood sugar attack and kidney failure were inaccurate to their experience with diabetes despite it being a true story. I love "Steel Magnolias" though! Sometimes the creator has a lot less influence over the direction of a show than it appears on a mass produced show like this. They are often beholden to funders and producers. Regardless I think they can do better on all fronts except casting. I'm surprised JJ's actor has not voiced concerns but some disabled actors are so desperate for money they keep quiet.

    Mary Grace, I love hearing your thoughts! Please continue posting.

    Tamie, I have to agree. So sad. Hollywood does not accurately reflect a lot of things be it culture,beliefs or disability.
    Last edited by funnylegs4; 10-19-2016 at 02:36 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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

    I agree with you, and "Speechless" is trying to fit into that mold of other sit coms. It's disappointing, because this was a great opportunity to illuminate the average person about life with a disability.

    I've mentioned the wonderful show, "Life Goes On," in previous posts, which featured a character who has Down Syndrome. That was very well done.

    How is Tyler? Any news from the VEEG? How are you? Healing prayers continuing ~

    ((((((funnylegs4)))))) ~

    I'm sorry. I didn't mean to imply that you wouldn't be watching the show. I was just reiterating that I would likely continue to watch it, so that I can judge it better.

    And, of course, I know that you know all too well about accessibility issues. I was just stating the obvious, and that we clearly still need to advocate for ADA compliance.

    It would be interesting to know the backgrounds of the "Speechless" writers, and their experiences with people with disabilities.

    Thanks for sharing that the show was pre-empted tonight. That was due to the Debate.

    The failure of "Speechless" is just one more compelling reason why you should and must keep writing and making your films. There is a huge void, and you need to help fill it!

    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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  13. #38
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    I never missed an episode of Time Goes On. Wonderfully show. Sadly, all of the quality shows are short lived. Some nights it is hardly worth turning the TV on.

    Tyler's about the same. Never heard back from the neurologist. Typical. Tyler is coughing daily and needing suctioning to keep him from choking or aspiration. Doesn't seem to be ill, just coughs. We were told years ago that his upper airway could collapse at any time so hopefully that isn't the problem. As usual, we are in a holding pattern waiting for the next problem to arise. See the spine surgeon next week to see how the scoliosis/kyphosis is progressing. Tyler just isn't happy these days and would love to know why.
    grandmother of Tyler (22): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

  14. #39
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((Tamie)))))) ~

    I agree with you, and "Speechless" is trying to fit into that mold of other sit coms. It's disappointing, because this was a great opportunity to illuminate the average person about life with a disability.

    I've mentioned the wonderful show, "Life Goes On," in previous posts, which featured a character who has Down Syndrome. That was very well done.

    How is Tyler? Any news from the VEEG? How are you? Healing prayers continuing ~

    ((((((funnylegs4)))))) ~

    I'm sorry. I didn't mean to imply that you wouldn't be watching the show. I was just reiterating that I would likely continue to watch it, so that I can judge it better.

    And, of course, I know that you know all too well about accessibility issues. I was just stating the obvious, and that we clearly still need to advocate for ADA compliance.

    It would be interesting to know the backgrounds of the "Speechless" writers, and their experiences with people with disabilities.

    Thanks for sharing that the show was pre-empted tonight. That was due to the Debate.

    The failure of "Speechless" is just one more compelling reason why you should and must keep writing and making your films. There is a huge void, and you need to help fill it!

    Love & Light,

    Rose
    Hi Rose,You're welcome! No need to apologize! I'm not upset. Sorry if I sounded a bit harsh. I was not feeling myself the last 2 days. I know you know all of this. You are smart and informed. An easy way to find out background on the writers would be to look up their names on an episode list on a website and then look up their bios. Then you may find ways of contacting them over social media or otherwise. If I wasn't working a lot these days I would look up their bios myself. My guess is that they are standard TV writers hired in the conventional way so even though most people have an experience with disability at some point in their life they may not have had that experience yet. What they are writing is also a specific disability which is unique from other disabilities so that would make the experience less likely. This is less of a flaw in the writing staff itself and more of a flaw in not hiring either writers who are disabled themselves or hire somebody who knows disability from care taking or friendships,work etc and in my opinion from the way that I have had to go about finding talent for my films is this: 1: They don't know professional disabled writers exist,or 2: Don't care, or 3: They don't have the time,money or patience to look in the more unconventional, less well known places for such talent. In this case since they already hired a disabled actor I am guessing they just don't have the time. It's a lot of work. People often don't get how hard it is. I have endless time on my hands for my projects because I make it that way, but these people have professional paid deadlines to meet. What we as the disability community must do is make talent like actors, writers, and producers easy to access for the Hollywood professionals within their deadlines by getting ourselves out there and also creating websites,databases,and casting agencies that can provide this information to productions who want to hire us fast. Most of this information just is NOT there. I know because I have looked. Professional Hollywood productions also don't always want to take the risk of hiring unknowns whereas I don't mind doing that. And of course I will keep making new content. I have a new project in the works now and will post the information once I feel I can release it. If all goes well some updates will come in November but I may have to delay releasing info until 2017 because of the above mentioned processes. I'm glad I still have a need to fill with my writing but I often forget how needed it still is so thank you so much!

    Here's an interesting article about "Speechless" that addressed some of our concerns(sort of) and has a different take on others http://www.slate.com/blogs/browbeat/..._disabled.html

    Tamie, Perhaps the coughing is allergies? Allergies are particularly bad this season. So sorry Tyler is not happy. :(
    Last edited by funnylegs4; 10-20-2016 at 02:19 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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    ((((((Tamie)))))) ~

    After all you went through to get the VEEG, and the neuro hasn’t contacted you with results yet? That’s shameful.

    My boys always generate excess saliva during seizures, so I wonder whether that is Tyler’s issue with secretions. Is Tyler on Dilantin? Overgrowth of the gums and palate can also cause excess saliva and problems with swallowing. That’s why Jon had his teeth removed and gum surgery in 2009, when he was hospitalized with aspiration pneumonia.

    I wish that you had some answers, any answers to all of Tyler’s problems, and I hope that the visit with the spine surgeon is meaningful and helpful.

    Continuing prayers for all of you ~

    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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