Sunday, 21 October 2007

A question of Ethics

I mentioned my PA (personal assistant) yesterday. I haven’t always had a PA. Until C turned 18 ‘he’ had a PA (who I employed on his behalf) for about 5 years. But when he turned 18 I was told he couldn't have a PA anymore even though it was working well because….he couldn’t consent to it!!! I appealed, it went to an ethics committee and we were turned down.

Here in the UK when you become 18 you are an adult in your own right, and apparently I don’t have a say anymore! So we then had to go through the whole process of me applying for a PA in my own right as a carer. Obviously I got it!!

This consent issue reminded me of the recent case of Alison Thorpe. Benefit Scrounging Scum, and others have blogged about this so I wont.

As mentioned before I don’t feel I have the right to sedate C as it would only be of benefit to me and not him.
But do i have the right to put pictures of his bedroom on the Internet?
Or putting pictures of C on here, without his consent. Or even blogging about him. If he were any other 19 year old I could ask them and abide by his wishes, But I cant with C. So should I adhere to his human right of privacy now he is an adult? Or do I have a right as his mum to use my own judgemeant?
C is on show all the time when we are out, he is looked upon as some sort of freak. Hence I wanted to do a blog about us to show people he is not. And by educating people it would be of benefit to him. Is this my right? Like Alison Thorpe, I am just doing what I think is morally (but maybe not ethically) right.


But is it?

49 comments:

Billy Boy said...

What is the right answer to a question.....? There is more than one right answer but how do you know its right? There's money to be made and somebody wins and somebody will lose......but if you choose the wrong answer then somebody will say its wrong and somebody will say its right.? so what is right and what is wrong?
I'm not sure but are you sure, as I don't know you know....Thank god I'm Irish!!!!!
THAT LAW IS AN ASS!

Nancy said...

Cas, you are a mom, talking about your son... as do I ... I don't ask my 22 year old son for his permission ... we are moms, just enlightening readers about our sons.

C is autistic, Bryan is in construction ... they are both sons to each of us. We love them and talk about them just the same.

Helen said...

Good question...
Actually I don't feel you blog is a way of "presenting" C. Yes, he is the center of most of your posts, but this is because he belongs to your life.

I was reminded to the posts, where you are writing on Autistic sensing the world and compare it to our own behaviour (like having certain "tics"). C would for sure love such posts since they make himself more understandable.

And actually I also think IF C. was aware how much you are caring and thinking and fighting for him, he'd be very happy that you found a place for reflecting, being supported and collecting feedback - don't you think?

Have a lovely Sunday! And treat yourself a nice coffee - wish we could drink it together :-)
What is C's favorite drink?

Casdok said...

Yes that is what i would like to think!!
But just thought it would be interesting to get other peoples views!
The offer of a coffe does sound nice!
C, well he drinks blackcurrent, not sure if it is his favorite as he wont try anything else!!!

Pixie said...

I think if you were able to ask C for his permission he'd go 'Aw Mum' in that self conscious way that all teenagers do, but would also be secretly pleased that his mum loved him enough to want to talk about him, and present him in a way to make people accepting of him.
pxx

WesterWitch/Headmistress said...

Casdok when it comes to C - you are the best judge of what will benefit him and from what I know of you I believe you will always 'do right' by him. But remember to think of yourself too . . .

Shrink Wrapped Scream said...

What most of these dumb-ass bureaucrats fail to acknowledge is that some children like ours will never "grow up" in the real sense of the word. My son will always have the emotional maturity of a four year old, and the larger he becomes, the more care he requires. He needs this from the people who love him and who want to put his best interests first. He is fourteen now, I dread him turning eighteen for this very reason, as what little support I do have to enable me to care for him will be totally withdrawn, and we will have to start fighting for him all over again. (Sigh) Noone questions your dedication and love for C - thank God for mothers like you, bonny lass. ((x))

Casdok said...

Yes things do change when they become adult. When the recent incident at school happened, i was told they didnt have to inform me because he was an adult!!!
Also because of the concent issue, i got C a pass port and joint bank account before he tuend 18. Things to bear in mind.

Casdok said...

Me again!
I suppose i feel a bit of a hypoctite, as i want equality for my son, but i also want exceptions to the rules!

BBC said...

I think that you are doing just fine and shouldn't worry about what the rest of the world thinks. No matter what you do you will find support, and dissent. So just do what you think is right.

In this country I think that you could get assigned as his guardian so that you could make certain decisions for him.

"As mentioned before I don’t feel I have the right to sedate C as it would only be of benefit to me and not him."

Well, I don't know that much about it, but if you needed some rest I think that you owe it to yourself to get some if that is what it takes.

At his size it's a good thing that he isn't aggressive. I'm 5' 9" and would be a lot to handle if I was.

I was raised in a mining town where the mentality was to get as high in the pecking order as you could. I hated fighting but a few guys found out that I was not one to mess with after they pushed me into a fight.

My brother spent much of his life trying to prove he could whip me, he never could.

Then 20 years ago I refused to ever be around him anymore. I don't have to put up with that mentality. Be peaceful or stay away from me is my motto. Hugs.

buffalodickdy said...

Do what you want until they say you can't. Getting forgivness is easier than getting permission....

WalksFarWoman said...

I'm so glad you started this blog, it's an invaluable source of information to people like me who know very little about this condition.

We all feel that our problems are paramount but compared to yours it's the difference between night and day.

You can only go with your gut instinct about what is morally right or wrong and unless you are breaking the law - take no notice of bureaucrats who make decisions from text books, they are merely emotionless puppets.

I hope you'll accept the award I have for you at my blog. :)

Odat said...

I'm a new reader to you and I think that it's an enlightening blog especially to those who go thru the same experience. I think you're being helpful and educationsl and think you should go on doing what you're doing!
Peace

Elissa said...

I think sometimes we can get caught up in the political correctness of life, and the 'technically right' thing to do. In our society there will always be debate over 'stuff' (legal, moral and otherwise), but ultimately, if whatever we do as mums, we do in a nurturing manner and with love and our children's best interests at heart, can we really go that wrong?

Elizabethd said...

You are always discreet when you write about C. You never overdo it,and you give us a picture of your life with him rather than just of his life. No, I dont think you are invading his privacy. I write about my grandchildren/children, and I certainly dont ask them!

Casdok said...

Thank you Walksfarwoman! I will greatfully accept your award!!
Wow!!!

Holly said...

Blogging in general is an interesting issue, because people put their personal lives out there, and rarely ask others. If I am going to put friends who I don't explicitly ask, I use their initials (much like you do with C). But I have one friend whose SIL uses their first and last names, childrens' names, locations, etc. When my son is grown, will I stop including him in my blog? Doubtfully. He will be of less importance most likely, because of less daily contact, but he will still be there.

My long way of saying, you're doing fine :-).

MY OWN WOMAN said...

First off, let me say that I think you are doing a wonderful tribute to a son whom you obviously adore. Let me also say that some "normal children" would be ecstatic to have you as a mother.

I have one puzzling question. In the US, "C" would not be permitted to sign any of his own papers for health care and would not be legally permitted to enter into a binding contract; yet the powers that be have taken away your right to have a personal caregiver to help you with "C?"

I'm sorry, but I just don't get it.

Casdok said...

And nor do i!!!

Sara said...

oh my! She's YOUR PA?! Well now thats insain. Here I do believe that when children become adults and still need PAs they continue to have them. I had applied to work with a woman who needed assistance and care and was 21, still lived with her mum and she was interviewing me so clearly she still got care. I can't believe they would take it away from a non verbal under the thought that he "isn't consenting" clearly he CAN'T! Oh thats infuriating...

Ian Lidster said...

You've explained more to me about this 'issue' from a personal level than I've gained from anything else that I've read. You enlighten and dispell prejudice with your blog, that has become a 'must' for me. Maybe the legalities read as they do, but we all know the 'law is an ass.' What you are doing is absolutely morally right. Please keep it up, my friend.

Casdok said...

Thank you! I will try!!

UN PEU LOUFOQUE said...

Difficult call. I read you rblog read teh links you gave, went awaythoguth and have been pondering on persoanl experiences of others i know.

Who can say which decision is right, so much is justified by what we feel is best when often it is what is most convenient. I dont see your blog as being offensive to C and also think perhaps without it you might have less of a safety valve for dealing with the rubbish rules of society regarding C and your rights. Therefore in my eyes it is a positive force for youand him adn others int eh same position.

As for the other cases you linked to who can say? One ever only get certain depictions of truth and reasons and we all know the papers and medai are awfully good at twisting things to suit their ends. I jsut know I wouldnt want to be in any of those parents shoes.

Vi vi vi vooom!!!!!!!! said...

Mother knows best.

Exmoorjane said...

I think that is such an interesting question and you know what? I really don't know. All I would say is that sometimes you have to turn things round.....does it do C any harm? If not (and I can't see it does), then I would say that what you are doing is a greater good - educating people who know little or nothing about autism; giving valuable support and encouragement to those who know all too well....
But then I'm no philosopher!!!

Niksmom said...

Casdok, first of all,you are not at all advocating any sort of extreme measures for C such as the Thorpe case (or Ashley X here in the U.S.). And secondly, I think the fact that you are even raising the question and truly reflecting upon it speaks volumes about your respect for C's privacy and dignity.

My take on your blog is that it is more about your life as C's mother thanit is about C himself. You always manage to raise provocative questions that I ponder (may not always answer 'em but I *do* think about them!); you raise practical considerations (such as the bathroom walls!) that many people have no clue needs to be considered by parents such as us.
You always, always, always write about C with love and talk about your "adventures" in public in ways that raise awareness --NOT any shame, frustration, or embarrassment. I think, if C *could* consent to your writings he would do so.

I, too, do not understand the legal situation with C. Can you not retain power of attorney in a situation where your child clearly cannot make decisions and indicate preferences for himself? That has to be incredibly frustrating and heartbreaking.

Ivy said...

God this is difficult . Forgive my ignorance but are you not his guardian as he can clearly not make his own decisions. Where I live people with mentalor physical disabilities (Can) have a guardian who represent their charge in every legal matter.

Anonymous said...

I do not look upon your son as a freak i know how people look at hin have seen it with my own eyes and your such a wonderfull and patient mother x

Casdok said...

From Mencap... Relatives cannot become the legal guardian of an adult with a learning disability. A term such as "guardian" carries no legal meaning in respect of adults ...

Mary P Jones (MPJ) said...

I wonder about this myself. I blog about several adults (my parents, my friends) who don't know about my blog, so I am putting them out there without consulting them -- and because I'm in the addiction recovery blogging community, I know quite a few bloggers who do this as well. I feel conflicted -- the other bloggers who secretly blog about their husbands or wives or partners feel conflicted.

But I think in the end, my blog is mine -- it's not about the other people in my life, but my feelings and my reactions. And likewise, I think your blog is yours, about you and your reactions and feelings about life with C.

Chris H said...

I believe wholeheartedly that what you are doing is totally fine, there might be people out there who disagree, that's their problem! I think your blog is enlightening and educational, so what is wrong with that? NOTHING.

BenefitScroungingScum said...

'I suppose i feel a bit of a hypoctite, as i want equality for my son, but i also want exceptions to the rules!'
I think you've hit the nail on the head here Casdok, and its why I object fundamentally to the proposed treatment for Katie Thorpe, it sets a precedent, and its a dangerous precedent to set. Not all parents know best, or fight for their children like you do C, mine certainly never have done and so I'm very much in favour of those state imposed safeguards for those children now growing up with parents like mine and far worse who need somewhere to go to have their rights protected and advocated for.

As for C and the blog, I agree with whoever said this is primarily your blog, but I also think it's different as it doesn't impact C physically and it's reversible. That aside, definitely carry on, you've taught so much to so many about autism and I'm sure C would be stimming with joy if he knew.
BG x

Casdok said...

Ive just been stimming with C for the past half an hour, telling him all about it. Of course he had his fingers in his ears and was humming rather loudly. What are teenagers like?!! I shut up in the end when he motioned me to go away in no uncertain terms!!!

BSC, im sorry to hear about your parents, i know of other parents too, like that, so i do understand the safeguards.

whimsicalnbrainpan said...

Given your intentions I'd say that it is.

Withy Brook said...

You follow your instincts. You are a fabulous Mum and know far more about C's needs than any bureaucrat. There is so much nonsense talked about 'rights' C's right is to have a marvelous Mum - and what is talking about him in your blogs going to do to him that might be detrimental? LOL

Withy Brook said...

You follow your own instincts. C's right is to have a mother like you. What harm is talking about him in your blogs going to do him? None. The bureaucrats have no idea about the REAL needs of the likes of C. LOL

The OE said...

The goal is to maintain National security. Those of us dedicated to that quest know that not everything needs to remain Top Secret, and that disinformation as well as information overload are our true allies.

Marla Fauchier Baltes said...

I have wondered about the blogging issue since I began mine. I always wonder if it is a mistake or if I am putting my child at risk. My daughter participates in her own blog which is great but when I write about her health care and our struggles I feel conflicted about sharing it. I have learned from your blog and feel nothing but love when I read it. I want the best for C just like for my daughter. It is all of the not so nice people out there I worry about.

dykewife said...

in canada, if a person over cannot give consent because of health or developmental issues, a guardian is the one who gives consent. the guardian is frequently a parent or adult sibling, but can be a social worker or other government or non-government representative if no family is in the position to do so.

Merelyme said...

i have pondered this myself as i have a website about my experience parenting my son who has autism. i feel the pros outweigh the cons by a mile. you are helping people here...not just other parents but folk who may have never heard of autism before.

you are also one of the most respectful mothers i have seen in the blogging world.

you are doing well my friend!

BBC said...

BSC, im sorry to hear about your parents, i know of other parents too, like that, so i do understand the safeguards.

Did you mean BBC? If so, please don't feel sorry for me, I got over it a long time ago.

They were just my parents, just a way for me to get here in another form/body.

Um, never mind, it's hard for others to understand the spirit. Hugs.

Jocelyn said...

There are no correct answers to questions of morals and ethics, I fear, but if you are acting out of love, as you are, I wouldn't ever question you!

Ivy said...

Casdoc did I undertand you properly?
Until a child turnes 18 you are his legal guardian but after that you are suddenly told you are incapable of caring for and deciding what is best for your child if he/she is not capable of caring for her/himself?
How is someone totally unaquainted to your son supposed to know if he is doing what is good for him or in his supposed will?

Shari said...

I never think about asking permission to post pics or write about something in my blogs. I just do. I think as long as it's in good taste and educational, it's okay. Your son is special. He's here for a reason. Maybe to teach humanity or empathy. I think you are a caring mom who would do anything for her son, as any mother would do.

bb's mom said...

The blog/privacy question is such a fascinating issue to me as a mom and attorney and blog reader (and nerd).

Thanks for the comment over at my blog -- I have thoroughly enjoyed reading the responses to your post on the topic!

Christy said...

I don't think you are out to defame anyone. You are not afflicting pain. You are not keeping C from being President (although he would do a better job).

With that said, I feel you shouldn't even ask yourself the question about ethics. You are his mom and you will be his mom eve after you have passed on from this world. There is nothing that can change the fact that you gave birth to this boy. That connection or bond is one no one should ever have the authority to question or bend.

I'm sure in your heart of hearts you guage what you share and always have C's best interests in mind.

DaisyDeadhead said...

So many fabulous parents here, I love this thread, and send you all my love.

I have dealt with this same thing as a parent of a nondisabled child, so how different is it really?

My kid went off the proverbial deep end as a teenager, ran away, took drugs, et. al. and I would sometimes like to discuss that and the effect it had on me, which was profound. But she DOES read my blog from time to time (she is 23 now, and a parent herself) and that would invade her privacy. But it's my life too, so how to deal? I honestly don't know.

It has left me to just make snarky asides, about how teenagers tear your heart out, etc, but I haven't felt okay going into details. Quite honestly, if I thought she wouldn't read my blog or get angry, I probably would spill the whole thing. ;)

Love yall! Again, my love and goodvibes to such caring parents.

Princess of The Golden Thread said...

You are a wonderful mum. How wonderful the world would be if everyone had a mum such as you. My different child is ADHD and a genius , and sometimes I wonder if he would be considered as Aspergers if he was a young boy today.

You blog has really educated me about Autism. I think C would be, and is, proud of you. I don't believe you are hurting him, but you are helping a lot of people. You write with dignity, integrity and respect. Your love for your son comes shining through. Keep blogging - the rest of us need the education and I for one will view the C's of the world in a different light from now on.

Many hugs to you,

Tom P. said...

In the US, you would have your son declared incapable of making his own decisions due to his disability and become his guardian.