How do we respond to situations like Robert Latimer

[Kimmio Laughterlove]

I won't disagree with you. It was stupid and many of the reports about the evidence and trial talked about that. But, in the end, is was mostly about trying to protect his wife - misguided as it was.

The controlling behaviour, I believe, was a factor in his decision to kill Tracey.

 

[Kimmio Laughterlove]

And I am truly sorry if you live with pain. But I don't think it is fair to compare your experience to my son's. Similarly, when it comes to my son, my assessment is the most accurate one in terms of his pain. And please don't suggest that I don't think my son doesn't enjoy his life. We have fought VERY hard to protect his QOL. For the moment his pain is controlled and he is happy. When his pain is not controlled he suffers. He has suffered for years at time when we didn't manage his pain well. I hope to never return to that place. It is also what has informed some of the decisions we have made about the level of intervention we will consent to when it comes to his care.

Don't be sorry. At least not for the physical pain.

When life looks bleak to me it's the psychic pain of not having the understanding or support I need and people with more power controlling that.

 

[Northwind]

Yeah, and I intend to live with whatever pain can't be controlled. Do not want anyone ever having the power to say for me that I am in too much pain to have a valuable life. There are things that ultimately make me happy to live regardless.

You are fortunate to be an intelligent woman. You seem to have a good support network of people who know and love you, and who would advocate for you in the event that you needed that. You are ultimately the one who decides aren't you. Whether that decision is something are are verbally able to express, or whether it is something you express in some kind of living will, you get to decide.

Perhaps people like Matthew have other ways to show they are done. I don't know that. What I do know, is that Matthew is blessed to have people by his side who can advocate for him.

This really shows how complex decisions around people with disabilities are. You both have CP. You have similarities and profound differences. There's never a one size fits all approach, nor should there be.

 

[DaisyJane]

So will it be your refusal that is the deciding factor on the end? Sorry if I have not phrased that correctly. I trust that you know what I mean. Would 'legality' get in your way?

Short answer, and then I need to step away for a bit. Life calls. Yes, to a point. I would never end my son's life in the manner Latimer did. However, I also have very clear boundaries about what we will consent to in terms of his life and QOL. We recently had a very serious ICU admission in December when we were forced to revisit those parameters. For a few days we were not sure he would survive. During that admission we also learned that we probably need to clarify some of our boundaries.

Ultimately, I will always want intervention if it supports my son's QOL, or if after a period of time there is good reason to believe he will return to good QOL. In other words I will consent to surgery if needed at the moment because there is good reason to believe he will be okay and the alternative is chronic pain. However if there is reason to believe that interventions will only prolong his suffering then we will ask for palliative/ comfort care. I do not want my son to die. It would destroy me. But I will not keep him alive and suffering simply because I cannot bear to lose him. I will always function within the law - and yes, I would be allowed to make these decisions.

For the record, I am happy to share where we stand and how we make decisions about Matthew's care. I believe this is an important discussion and one worth having. I am not willing to have our decisions critiqued or questioned.

 

[DaisyJane]

Don't be sorry. At least not for the physical pain.

When life looks bleak to me it's the psychic pain of not having the understanding or support I need and people with more power controlling that.

Yeah. I can understand that. That truly must suck, and I don't blame you for being angry.

 

[BetteTheRed]

/contentment/happiness.

Can you distinguish between those two?

Yeah, and I intend to live with whatever pain can't be controlled.

That's a noble motive, Kimmio, and it will probably work just fine for you. I do not want to drag MAID into this, but "pain" is sometimes a wyrd thing. Dr. Don Lowy, from Mt Sinai, a pioneer in the MAID dialog described one of the "pains" of his brain tumour - a REALLY loud sound in his head, like being really near a train, that he could not suppress with anything and which went on all of the time. That's not pain, that's hell.

 

[Northwind]

Don't be sorry. At least not for the physical pain.

When life looks bleak to me it's the psychic pain of not having the understanding or support I need and people with more power controlling that.

That's another tough spot to be in. Psychic pain is exhausting. It's often invisible, so not always taken seriously. I hope you have at least one person as a support in real life.

 

[Kimmio Laughterlove]

Can you distinguish between those two?



That's a noble motive, Kimmio, and it will probably work just fine for you. I do not want to drag MAID into this, but "pain" is sometimes a wyrd thing. Dr. Don Lowy, from Mt Sinai, a pioneer in the MAID dialog described one of the "pains" of his brain tumour - a REALLY loud sound in his head, like being really near a train, that he could not suppress with anything and which went on all of the time. That's not pain, that's hell.

You're right. This is more relevant to the MAID conversation.

What Matthew me and Tracey have in common is cerebral palsy. I was fortunate that the effects were much more mild when I was younger and I wasn't intellectually disabled by it. The physical pain is increasing with age - premature aging of muscles and joints, and contractures. I'm basically experiencing what people normally don't experience for 2 or 3 more decades. What hurts is that people expect me to buck up and get back to my previous norm. I can improve my fitness level to some degree but overuse syndromes are hard to avoid there too. I'm independent minded and the machinations of the control freaks everywhere - who would rather order people around than help them - make it hard for me to be myself in the world.

 

[Northwind]

What hurts is that people expect me to buck up and get back to my previous norm. I can improve my fitness level to some degree but overuse syndromes are hard to avoid there too.

I've noticed people doing a variation of that to me now. It's in the form of "you're all done treatment now, that's behind you so you can be normal again" Um, no. Even if I could go back to "normal", I'll always have this hanging over my head. I doubt I will be "over it" (whatever the hell that means)

I've decided that people can have their opinions. I can chose how to respond. As an example if someone has a problem with my flat chest, that's their problem not mine.

I hope you can come to a place where you can accept where you are so you can do what's best for you.

I'm independent minded and the machinations of the control freaks everywhere - who would rather order people around than help them - make it hard for me to be myself in the world.

I totally understand the independent minded thing. This being vulnerable thing can be a challenge. Still, we have to be ourselves in spite of the control freaks. They have bigger problems than we do in my humble opinion.

 

[Kimmio Laughterlove]

You are fortunate to be an intelligent woman. You seem to have a good support network of people who know and love you, and who would advocate for you in the event that you needed that. You are ultimately the one who decides aren't you. Whether that decision is something are are verbally able to express, or whether it is something you express in some kind of living will, you get to decide.

Perhaps people like Matthew have other ways to show they are done. I don't know that. What I do know, is that Matthew is blessed to have people by his side who can advocate for him.

This really shows how complex decisions around people with disabilities are. You both have CP. You have similarities and profound differences. There's never a one size fits all approach, nor should there be.

I don't have a "good" support network. I have a lacking support network of people I love (my mother is not very educated about CP beyond what she was told when I was a child, and doesn't care to be) - to ask for much help is a burden to them.

 

[Northwind]

That's too bad @Kimmio Laughterlove

It's not too late to develop one.

 

[Ritafee]

I don't have a "good" support network. I have a lacking support network of people I love to ask for much help is a burden to them.

Double whammy when your 'legislative' government 'for the people' has designed your access to 'public support' as a 'bureaucratic nightmare'.

 

[Kimmio Laughterlove]

I learned what I need to know about how much future help I'll have from family when I broke my patella (kneecap) and was dependent on them then lost my housing and took ages to find a place to live that still isn't affordable. I remember having trouble with personal hygiene because I couldn't bathe or shower easily or even wipe easily. I asked my step dad to buy me some flushable wet wipes and he said "For what?! To wipe your ass? Nobody uses those!" And I had to beg and give details. I remember my mother telling me /asking me - since they were altering their life to have me there - what am I going to do to help them (not later, but at that time)? I remember her telling me resentfully that putting assistive devices in the bathroom made it look like a hospital ward. I understand they were stressed but not as stressed as me. I couldn't (safely) get out of the house without a ride and they made it a point not to make that a regular priority - so I ventured out on my own on my broken leg every day. I tried to pack my stuff at my apartment - that was left empty for three weeks but my lease was up - by myself. When I went back for my first x Ray I had made things worse. The bone was out of alignment and it was going to take longer to heal. It was living hell. And not because it was excruciatingly painful physically, so much as emotionally. I learned I have to keep my wits about me as I age and beware.

I realized also that there is very little in the way of protections against these abuses for people with disabilities to begin with.

 

[Ritafee]

I realized also that there is very little in the way of protections against these abuses for people with disabilities to begin with.

And we are back to ... you cannot legalize compassion.

 

[DaisyJane]

Can you distinguish between those two?

For the most part, yes. Mostly we know when he is happy and joyful because he is very clearly happy. He will laugh, and giggle, and smile, and clearly seem to be enjoying whatever is happening - like the picture I posted. Contentment is more the absence of clear indicators that he is either in pain/suffering/agitated, but he is also not overly happy. For example, he might be quite contentedly watching a cartoon, or listening to music, or hanging out with his dad watching the Leafs.

Now that we have pain control his baseline is either content or happy for the most part. Which really helps us to identity when he is suffering or in pain. We also know that if he is showing us he is in pain then something is wrong, it isn't just because he doesn't like the cartoon we have on TV.

 

[Northwind]

I realized also that there is very little in the way of protections against these abuses for people with disabilities to begin with.

That's sad when you're an articulate, intelligent woman. No wonder you're such a fierce advocate.

Seriously, I hope you find people who are supports, or heck, even accept help from people who are willing. Clearly, that isn't your parents.

 

[Kimmio Laughterlove]

Oh, and when they decided that my sponge bathing myself was not enough (though as my OT said for most people in the world that's common and it saves water) - my mom and step dad decided one day they were going to have to give me a bath. I said something along the lines of f-you, you sick control freaks! - which probably didn't help with household harmony...but seriously. I am in my 40s that's none of their goddam business unless I asked for that help. They didn't bathe me. I called my aunt in another province and she was on my side.

 

[DaisyJane]

I absolute agree with Kimmio's comments about the challenges for people living with disabilities. As she has repeatedly pointed out there are many, and they often conspire to make the lives of PWDs inordinately difficult. Our experience tends to be with families and more complex kids/young adults, but I get the sense that the challenges are pervasive across the spectrum. Poverty, lack of supports, isolation, the risk of abuse, our society does a crappy job of of supporting people who need support, as well as their caregivers. Ableism is a very real thing and needlessly limits the lives, opportunities, and potential of people living with a whole range of disabilities. We see them as less than capable when they are creative, bright, and very capable.

Which is why I think voices like Kimmio's are extremely important. It is also why I would actually like to have a real conversation with you Kimmio. Because I think if we could move beyond some of our more extreme differences we would find a great deal of common ground. I also think we could learn from one another. I know I appreciate hearing what you have to say

 

[Northwind]

I said something along the lines of f-you, you sick control freaks! - which probably didn't help with household harmony...

There's absolutely a place for that! Gads. I'm thankful that has never been an issue for me. I've had people impose help on me. Thankfully, they have responded well when I've thanked them and told them I didn't need it. I reassured them I'd ask if necessary.

When I was getting radiation I carefully scratched my nose, thinking I was keeping the important parts still. The techs told me to stay still, they were dealing in millimetres. They said they'd scratch my nose for me if necessary. I felt that was taking this vulnerability thing too far. Can you even imagine how I'd respond to needing to be bathed.....

 

[Kimmio Laughterlove]

Thing is I didn't need it. I managed to find a system where I did it very thoroughly every morning and every night. I had dry shampoo. I figured out how to prop myself up so I could wash my hair once or twice a week in the sink using the tap and a cup. I took inordinately long to change my clothes - including socks and underwear, everyday, too. I used deodorant. I was decently clean. I am an adult and I've always put importance on my personal hygiene. I told them I didn't need that and they responded to me like I was being a difficult child. That's when I said f-you (which again they didn't respect that it was not a childish response, it was a necessary one).