KJIPUKTUK (Halifax) – Early last week Halifax disability rights activist Joanne Larade passed away.
Larade was an executive member of the Halifax Chapter of Muscular Dystrophy Canada, and a resident of a long-term care facility.
Larade advocated for people with disabilities who are institutionalized in long term care homes because the government is not providing suitable living accomodations in the community.
At the moment there are at least 240 Nova Scotians between 18 and 60 residing in long-term care. There are no group homes catering to their level of need or age group.
See also; Nova Scotians with disabilities want community-based living supports now
On February 28 of this year Joanne participated in a panel at the Halifax Central Library on housing and dignity for Nova Scotia’s severely physically disabled.
In personal terms she explained what it is like to find yourself, at the age of 42, living among people with dementia, many twice your age.
What follows is a transcription of Joanne’s remarks at that panel.
In the end I can say that what I have learned about myself is how incredibly strong I am, because I have to be.
I first encountered long term care almost six years ago, when I first moved in. It was terrifying, but it was also exciting at the same time. However, I soon learned the struggles I would be facing every day for the rest of my life. There is nothing that can prepare you for a life in long term care, especially at the age of 42.
I quickly learned that I had to be incredibly patient and very, very strong. Living with 12 other people you learn very quickly where you rank. I am physically disabled but I am completely cognizant, so living with a majority of seniors who have dementia, who don’t understand what’s going on, who do you think is ranked lowest?
This is where your strength and patience has to come out. Living with people with dementia has to be the most difficult thing I will ever encounter in my life. If you have experience with one of your own family members you know how hard it is to deal with it on a daily basis.
However, put yourself in our shoes, living not with one, two or three but with five or more roommates with this disease. Nobody has any idea how hard it is on our mental health, especially with no support.
This is where your strength has to prevail. I realized that I don’t know if I can live this way for the rest of my life. It is not fair that just because we are physically disabled, that we are forced to live with people twice our age, with most of them suffering from dementia. It makes it impossible to even have a conversation with anyone except with staff.
I want to make it clear that I am not saying this to offend anyone. I live with these people, they have all become my new family, and I care deeply for everyone of them. I am there to keep watch over them. I am there to console them when they are lost. I am there to keep them occupied when they are bored. I am there for them all the time. However, some days it is too much to handle.
In the end I can say that what I have learned about myself is how incredibly strong I am, because I have to be.
I am positive because I can’t let myself get down. I have learned that I am patient, I have learned that I do make a difference in people’s lives. I have learned that I am smart, that I can use my talents accordingly. I have learned that I am a respected leader and that together we can bring change.
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