((((((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.
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.
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