Madam Speaker, I rise today in support of the member for Halifax West, who introduced Bill C-278.
The bill is designed to make March 26 Purple Day all across Canada every year. The purpose is to raise awareness of epilepsy and to help epilepsy sufferers, their families, friends and communities recognize that there are many among us who suffer from epilepsy, but they are a part of us. Awareness will help all of us recognize how to help epilepsy sufferers during seizures and reduce the stigma attached to epilepsy.
I will start by mentioning the presence here of Susan Harrison, executive director of the Epilepsy and Seizure Disorder Resource Centre in my riding of Kingston and the Islands.
I am not standing on debate today because I am an expert on epilepsy. I am relatively ignorant of epilepsy. I am standing today because of a young woman who is a friend, a constituent and a resident of Kingston. She told me during the last election campaign that I really had to go to an event called Purple Day. At first I did not know what it was, but I attended it. I sat and listened and really realized that I did not understand epilepsy at all.
I want to start off by thanking this young woman, Kim McFarlane, who is the secretary of the Epilepsy and Seizure Disorder Resource Centres of Southeastern Ontario, for inviting me to the event and also for sharing a lot of her own personal experiences, which I will relate in my speech today.
I did not know that, for example, one in a hundred people suffer from epilepsy. That means about 300,000 Canadians. Probably a couple of members of the House of Commons are epilepsy sufferers.
What is very important is I did not realize how many different types of epilepsy there were and that there were stereotypes, mostly in our visual entertainment, of what it meant to have an epilepsy seizure. That means we do not often recognize it in our daily lives. We may confuse it and think that something else is happening, when really we have to recognize that epilepsy is a possibility and deal with it accordingly.
I would like to quote from my friend Kim, who talks about her own type of epilepsy. She says:
I apparently look spaced out with a glazed look over my face for 15 seconds to a minute. However, when I come around, I don't remember anything and usually I'm pretty tired. I could walk from point A to point B, but I won't remember how I got there. I could even have a conversation with someone, yet I won't remember a word of it. One moment, I'm working away, the next thing I know that there's a lapse of time I can't account for and I'm trying to piece together what happened. Of course, I'll never remember that brief period. All seizures are different and not everyone will have the exact same every single time. Sometimes I “space out”, sometimes I'll mumble, and other times well, even carry on what I was doing. This is just a snapshot of two of the many different types of seizures that exist.
If somebody told me about those symptoms a year ago, I would not have associated them with epilepsy at all.
In recognition of a day like Purple Day, giving it official recognition across the country will help with that awareness, and every bit of awareness of fellow members of our community will help bring us closer and allow us to help each other better.
Another aspect of awareness of different kinds of seizures is to help people who are suffering from seizures with safety during the seizure and also help support them when they come out of a seizure. Often when people come out of seizures, they are confused. They might be scared because they do not remember what happened and they have to figure out where they are now that the seizure is over.
I would like to again quote from my friend, Kim, about the stigma that is connected with seizures. This is the second thing about awareness, not only when somebody is having a seizure or right afterward and learning what to do, but learning how to live with other members of the community who have epilepsy and recognizing that they are just like everybody else. There is a couple of things they cannot do. They need special care for a few minutes sometimes, or longer, but we really have to avoid the stigma.
To understand what that stigma can mean, I would like to quote from Kim McFarlane again. She suffered from epilepsy as a young child, just like the person who is responsible for this bill, Cassidy Megan, a resident of the constituency of Halifax West.
My friend, Kim, also was diagnosed with epilepsy when she was a child. She said:
I remember the first time I ever directly felt the stigma attached to epilepsy. I was in grade 6 rehearsing for our spring play, when at the moment that it was my turn to say my lines; I had an absence seizure in front of everyone. Since I wasn't saying my lines, my teacher thought I must have been defiant. She threatened to send me to the office if I didn't answer her....[T]hat day still sticks with me. There have been many other instances, too, where I've heard comments over the years, including more recently, which one could describe as ignorant. Imagine if you will hearing someone refer to the second hand of a clock as something that looks like it's having a seizure; or standing in Dundas Square in Toronto watching hip hop/breakdancers and hearing 2 guys behind you say they “look like they are having seizures”; or watching one of your favourite reality shows, and a judge refers to a contestant's dance piece as though he's having a seizure because the body movements were a little crazy and all over the place. This is only a smidgen of things I've heard, and I'm only one person. Other times people just automatically assume that because I said the word “epilepsy” or the word “seizure”--they start panicking and think I must have tonic-clonic seizures and that I will convulse on the ground because this is the only type of seizure that is typically portrayed on primetime shows. However, the reality is I'd rather someone stop and ask me questions, than just make assumptions. It's better to become educated than to remain ignorant. The point of Purple Day is about raising awareness, about education, and about eliminating the stigma that is attached to epilepsy. As long as that stigma remains, many with the disorder will not disclose or talk about it for fear of backlash and prejudice.
That is one of the purposes of designating March 26 as Purple Day, to deal with the stigma and to educate people. It is also an opportunity to tell people about some famous people who have also suffered from epilepsy. I draw today from a speech which my hon. colleague from Halifax West gave. He mentioned a number of famous people who suffered from epilepsy: Dostoevsky and Neil Young, artists; FloJo, Florence Griffith Joyner, the athlete; Margaux Hemingway and Danny Glover, actors; and Pope Pius IX.
Purple Day is a chance to tell children especially that there are many very accomplished people in history and in the world who are co-sufferers of epilepsy. Maybe even “suffering” is the wrong word to use in some cases; it is just part of who they are. They are not somebody different; they are not outside the mainstream of society. That is another opportunity we would have, if we were to make Purple Day a national day of recognition and awareness.
I would like to conclude with a statement from my friend Kim who has been working to support and help people become more aware of epilepsy for a long time. She said:
Everyone is all unique and has their own special talents. Everyone deserves to be treated equally and fairly and not threatened by backlash or prejudged in any way. If 1 in 100 Canadians have epilepsy, statistically speaking, how many Members of Parliament, Senators, staff members, and all of their family and friends, have this neurological disorder? Help bring epilepsy out of the shadows by not only supporting Bill C-278 and asking questions instead of making assumptions, but by encouraging discussion, dialogue, and awareness not only here on Parliament Hill, but also in your own constituencies.