| " I have Down Syndrome... What then? |
Dear friends and readers,
Positive things first.
Your reading and writing comments or a "like" was a surprise for Dr Quack and the local Red Tape. As a consequence, a gardener has come twice and spent five hours and a half in the garden, pruning the demented wisteria, several offshoots of cherry trees, walnut trees, oak trees, making big piles of branches, and cutting part of the grass. A cleaning party is now decided for the 21 July - the whole day with three or four ladies and the gardener to move furniture and book boxes around.
Why is that the consequence of your action, will you ask? Because it is the first time they all here encounter an international public mobilization. You have a weight.
Thank you.
Thank you for your advice as well.
And where is The Little Family?
Anne-Fleur is sick at night. She is still scared to be torn from me. She stressed and strained. Every night she wakes up and is sick before she reaches the loo. She goes under the shower. I clean her. I clean the floor. I put her back to bed. I hug her. I rock her. I try to send her back to sleep, telling her that things will be well.
As to me, after asking various French organisations reputed to help handicapped persons and their families, I am back where I started.
No one has been able to tell me if "carers" existed in France. If they exist, which seems more and more dubious, do they receive a remuneration? This seems even more dubious. Should I have a "compensation" for taking care of Anne-Fleur? Who knows? No one. Each organisation tells me to ask the other. And they send me back where I started.
Meanwhile, I know now - and this was something that I was not intended to know: the person who said it was sorry to have done so -, I know that The Shopping Lady is paid €20,80 per hour to go shopping with Anne-Fleur. And she has told me she does not like it.
If I do a quick calculation, what might I earn? €20 x 8 hours (I will not count the night hours and the meal hours and part of the "being together" hours; I make it an ordinary working day). That makes €160. Shall I make a monthly estimate, taking out the weekends? Let's say I work 20 days a month: €160 x 20 = €3.200.
This is not bad. Even with half the amount, I would be happy!
But this is a dream.
Even for my lawyer, this is no legal issue.
As to my being declared mentally handicapped, this something that is never ever talked about. Never ever mentioned. Therefore, it is never said whether Anne-Fleur would remain with me or not.
It seems that the handicapped persons like Anne-Fleur are dealt with by our society when they are children. Then, when they become legally adults (in France, when they are 18), they are declared mentally handicapped, given an allowance, put under guardianship, and, most of the time, steered towards a job, staying with their parents while these are able to take care of them. When the mentally handicapped person grows old, she quits her job and her aged parents (or these die), and she is steered again towards a paid family who will take her on board, or towards a specialised institution until his/her death. There seems to be no one from the family after the parents. Brotherly or sisterly care? A void.
What am I to do?
I will need you again. Please, show that you read this blog. Please, tweet it. Please, re-blog it. Please, put it on Facebook. Please, make it known on the social media. I do not want to lose Anne-Fleur and Anne-Fleur does not want to leave me. We want to stay "The Little Family". So, please, SHOW YOU CARE. You may make the difference when I write to our MP, to the minister in charge of handicapped persons, and to the media.
Compared with the Brexit, with the wars, with the refugees, with elections, with democracy, with all the noise and the rush of the world, we are a wisp of straw, a mere nothing. However, the world, the countries, the nations, democracy - all this is made of wisps of straw, of mere nothings.
Please, help!
I am with you heart and soul.
ReplyDeleteThank you, Ellen. It is so disheartening to go from one organsation to the other without receiving an answer to what seems two simple questions.
DeleteDear Camille:
ReplyDelete"Why is that the consequence of your action, will you ask? Because it is the first time they all here encounter an international public mobilization. You have a weight."
We do have a weight. The weight of straw; the weight of wisps.
Polly Samuel used to see wisps which were actually air particles. She could lose and find herself in wisps.
Hooray for the five and a half hours of gardening and for the 21.7.2016 cleaning party.
"As a consequence, a gardener has come twice and spent five hours and a half in the garden, pruning the demented wisteria, several offshoots of cherry trees, walnut trees, oak trees, making big piles of branches, and cutting part of the grass."
Good to know they knew their tasks. We have tree warriors and pruners. So many traditional hundreds-of-years old trees.
"Meanwhile, I know now - and this was something that I was not intended to know: the person who said it was sorry to have done so -, I know that The Shopping Lady is paid €20,80 per hour to go shopping with Anne-Fleur. And she has told me she does not like it. "
I can see why the person was sorry. Wage secrecy! Glad the Shopping Lady has a relationship of frankness.
And that a person who does like it can do it for half.
Ordinary workers have penalty rates for weekends and unsociable hours and night shifts.
What about the generations of people who were abandoned and their siblings were told to forget about them or didn't know they existed? I would have hoped there might have been an angry groundswell which might have provoked change. To be separated from your sibling is a primeval thing like the trees and the grass.
Alice and Anne-Fleur are all, they are everything.
One Trisomy 21 narrative: a response by Michelle
Is Trisomy 21 a blessing?
Michelle, Joe, Kayla and Lucas are part of a military family. Would hope there might be solidarity on that count.
"It seems that the handicapped persons like Anne-Fleur are dealt with by our society when they are children. Then, when they become legally adults (in France, when they are 18), they are declared mentally handicapped, given an allowance, put under guardianship, and, most of the time, steered towards a job, staying with their parents while these are able to take care of them. When the mentally handicapped person grows old, she quits her job and her aged parents (or these die), and she is steered again towards a paid family who will take her on board, or towards a specialised institution until his/her death. There seems to be no one from the family after the parents. Brotherly or sisterly care? A void."
Yes. A void. No! Why should this be? If the sibling wants to and is capable ... or maybe there is a good caring mutual friend.
A book I read was TELETHONS by the late Paul Longmore.
"Anne-Fleur is sick at night. She is still scared to be torn from me. She stressed and strained. Every night she wakes up and is sick before she reaches the loo. She goes under the shower. I clean her. I clean the floor. I put her back to bed. I hug her. I rock her. I try to send her back to sleep, telling her that things will be well."
This is serious. And I did read the "Anne-Fleur's tears" post. Her straw is coming apart. We humans need three things: food; shelter and love/care. [and water too - of course in these hot south west France days - Marseilles was of course hot last night with the Poland-Portugal penalty slugfest].
Adelaide, thank you for your comments and for the link to the blog by Michelle. Trisomy 21 is NOT a blessing. As her husband says, it is a challenge. It is a challenge for the child then the adult "suffering" from it; it is a challenge for the parents; it is a challenge for the whole family. I take it as a long challenge for me.
DeleteAnne-Fleur is NOT an angel. She is no light come from God to illuminate our lives. Michelle is right: this is a cliché. But families use it commonly and make those who do not feel like them guilty when they should not.
As I wrote earlier, they are different as people with depression are different. And it is not always easy to live with someone different.
In this case of being a Down Syndrome person's carer, I say again that nowadays parents are free to decide if they wish to keep the embryo or not; when Anne-Fleur was born, they had not this choice but they might choose if they wanted to keep the child with them or not. There is not much choice for siblings: they defer to the parents' choice. Then, if they are "decent" as the British would say, they try to defer to the parents' choice even after their deaths. This is what I do. But it means leaving my own life to live Anne-Fleur's. And being sister AND carer. For this, I shall go on fighting for a status and a remuneration. I do love her. But she is also a full time job.
Camille:
DeleteAnd that Anne-Fleur is!
I think you need to find your own light and your own darkness and not have it depend on any other being, sentinent or supervenient or otherwise. Yes I remember "they are different as people with depression are different".
I am glad you were able to read the two blogs which I lent.
Michelle has been an activist for some time.
Joe is a very pragmatic guy - that is true.
"There is not much choice for siblings: they defer to the parents' choice".
Yes, and in modern times, the siblings are very often shown that they have a choice, that this is only part of their lives.
It is a long challenge, yes. If you can be fairly neutral about it. I know that there are a lot of kids who accept their families very baldly even in great instances of adversity and abuse. And there is finity and ambiguity too.
And I know there are a lot of cultural interpretations to this challenge.
There wasn't "the choice" until about the 1970s or the 1980s - anyway after the Pill and the Sexual Revolution. And amniocensis is a comparatively recent reality, certainly with the technology.
There is a person called Brian Stokto who is brilliant and realistic.
Reading Dead Man's Tales by E W someone. Have met the stone-deaf landlord in "My Convalescent Home".
These blogs have taken some weight of guilt off my shoulders. I see around me people who consider that I am doing what I MUST, HAVE THE DUTY TO do without complaining and without thinking of me. Some even think that I must occupy myself as I am being lazy just taking care of Anne-Fleur. As to ask for a status and remuneration or allowance, this is almost a sin!
DeleteWe are Roman Catholics and the people I have talked to in groups have chosen to keep their embryo, knowing he/she will be a DS person, with Christian convictions. In that case, the DS person is a blessing who shows the true values of life. He/she is here for the whole family to progress on a spiritual path. I confess that I see no progression in my spiritual path when I have to get up at 2 or 3 am to clean the house and clean Anne-Fleur when she has been sick. But when I say it or write it, I am made to feel guilty. This is why these blogs are so important!
Thank you for your help.
Yes, I have chosen to live with Anne-Fleur. I have chosen to make a Little Family. I would not change it and I would certainly make the same choice today. It had been put into my mind. Inbred, is that the right word? Forced down, consciously and unconsciously. But this does not mean that we should see this as a path of roses or it is but with its thorns!
Internalised, yes.
DeleteLet's talk about the progression/regression narrative.
In a way - the regression narrative has its harms. First of all, it presumes that you were going somewhere and that you had a purpose which was brutally disrupted or interrupted.
Then regression puts us into reaction...
Some provocations.
I know that we try to mitigate and obviate the guilt by any way necessary that we see.
Your spiritual path comes from the things you do to directly progress it - and only limitedly from circumstances.
I think your situation is a horror, and it is one of which the French authorities should be ashamed. At least in England there is something called the 'carers' allowance,' which is little enough, but may prevent starvation. I hope with all my heart that you can shame France into helping you, and poor Anne-Fleur. X
ReplyDeleteThank you, Liz. I am sorry I did not answer before but I was tired, sad and fighting a migraine.
DeleteHaving open support is a comfort but it is a help as well. I hope I shall find an answer or provoke one that will give me and others in the same position, a status as carer and a remuneration or allowance - as you say, to prevent starvation and to be recognized as having an identity.
It's so sad that Anne-Fleur is suffering because of the uncertainty, when what she needs most is comfort and security - I hope that when the cleaning and gardening is all done she'll feel that her world is put to rights.
ReplyDeleteI'm sure you will have looked at the stipulations made by the WHO about the rights and needs of the disabled, but there might be a form of words they use that would add weight to your case? It doesn't seem that France is meeting its responsibilities in such circumstances - although I think that a carer's allowance for you would be the right solution, because it recognises your autonomy, and that you are working, it seems ludicrous that Anne-Fleur's allowance should not be used to pay you; after all, it would be paid to a non-related family to take care of her, or the state would have to pay for her care in an institution. These things are bizarrely illogical.
Yes -
Deletethe International Classification of Functioning!
who.int of course.
I have now been looking about the UN texts, their endorsement at EU level and how they have been adopted by France. Of course, these texts are focused about the handicapped persons. Sometimes they mention the parents. But I have found nothing about the extended family, even siblings. It doesn't seem that we are recognized a status as carers. Which means no legal existence, no recognized job and no allowance.
DeleteI am looking for other texts, associations, specialized lawyers.
Thought I would leave Meg's Story here.
ReplyDeleteMeg lived in Queensland and her sister Ann Barry wrote about her life.
Meg's story by Ann Barry.
Another story I am thinking about is about Kathleen and her sister Margaret who wrote the story in 2000. I discovered it in 2009-10.
Peggy Fray died in 2014 - she worked in a palliative care group for those with learning disability [British sense].
Caring for Kathleen on Amazon