Monday, March 6, 2017

I am drinking my hot tea with honey. looking at January 2015 in the medical records of Rebecca and thinking hard about the work. It is important to remember that these papers are my sister's life. These papers say what happened to her. When I read these papers, I am getting the information to be her voice. Since disabled citizens are not actually citizens with full rights and freedom in our society there needs to be folks -hopefully in their own families who will be their voice in our society. All disabled might be are a group of ordinary citizens who face discrimination, less or no services/supports and are unable to live meaningful lives of any quality due to systemic failures in our society. This situation has not improved despite all the #GOASPIN and won't improve until families begin to tell the stories. Why are the stories of disabled citizens so important? Well I guess we say the facts in these stories of system wide failures to accommodate them or provide them with required services and supports so that they can live lives of dignity or really any life at all. At the end of life there is only family. You have to be there for your family members. You have to speak. And if necessary, you have to go to court to defend the right to be their voice in our messed up society.


Julie Ali
 feeling blessed.
Just now
A skin of snow has been laid down on the bone of pavement.Sigh. More snow to shovel.
It begins to feel we aren't in spring but still stuck in the horror of winter.
Younger boy has trudged out to do his duty at NAIT. The summer jobs did not get applied for yesterday so we will have to do the work today.
Snow is sitting like a crowd of spectators on the houses all about the writing room waiting. But really no one is cheering.
Snow is still falling down to add to the layer present. It feels as if the tissue of snow will accrete all day long until we are stuck inside our homes like dirt covered moles.
I have put the heat on in the writing room to defrost. There is no point shovelling now since the snow is a pointellism thing outside.
I am drinking my hot tea with honey. looking at January 2015 in the medical records of Rebecca and thinking hard about the work. It is important to remember that these papers are my sister's life. These papers say what happened to her. When I read these papers, I am getting the information to be her voice. Since disabled citizens are not actually citizens with full rights and freedom in our society there needs to be folks -hopefully in their own families who will be their voice in our society. All disabled might be are a group of ordinary citizens who face discrimination, less or no services/supports and are unable to live meaningful lives of any quality due to systemic failures in our society. This situation has not improved despite all the #GOASPIN and won't improve until families begin to tell the stories. Why are the stories of disabled citizens so important? Well I guess we say the facts in these stories of system wide failures to accommodate them or provide them with required services and supports so that they can live lives of dignity or really any life at all.
At the end of life there is only family. You have to be there for your family members. You have to speak. And if necessary, you have to go to court to defend the right to be their voice in our messed up society.

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