Photo Story- Emma Charbonneau
About Sienna
For this Photo Story I decided to do mine on Sienna Beaudoin who is a friend of mine who has a disability. Her disability is called Arthrogryposis Multiplex Congenita which is related to Muscular Dystophy. She was born 9 weeks prematurely and eventually found out that she was born with AMC. This disability is due to to the fact that her motor nerves did not develop properly because neurological cells in her spine were damaged. In her case this caused all of her joints to be affected, including her jaw. This meant that Sienna could not swallow or even chew properly, which is why she need to be fed with an NG (Nasogastric).
Not long after, she had surgery to have a mic-key and be g-tube fed. Still being fed with a g-tube today! In the images above is Sienna being fed by the tube as well as being burped with the tube. Because of AMC she also can't burp so this is her way of being being burped and I found this interesting because I never new this about her. I've seen a few times when she was in college with me that she was being fed with the tube but never the burping part.
What does she do?
I asked Sienna if she felt judge everyday for her disability. And she said no, but there are sometimes that people are really rude to her. Like when she goes and such. She doesn't see her disability as a struggle, because she knows that she is the same as everyone. She loves the same things as me and you. For example, she likes watching Netflix and Disney+. She loves play her Nintendo Switch and PS3. And most importantly play hockey with others like her. Now you may be thinking how she does this well, I have picture proof of how she does this!
First off is how she gets there with her caregiver or in this case with me. If she was with her caregiver she would have taken the accessible van, but because the caregiver was unable to come, I was helping with her jacket and stick and things like that. We also took an accessible taxi which is where you can see Sienna above.
Here she is ladies and gentlemen her playing hockey in her power wheel chair playing ball hockey with her group called PowerHockey Ottawa! This is an amazing group and they are amazing at playing hockey! It is a great way to build community and do something that they love to do together! They usually meet every Saturday, for a hockey game which I think is amazing! And they also do volunteer work for this, coming up they have a Spring Bake Sale going!
Here are some more pictures of her playing hockey. Not only do they play games they also do trainings just like as if they are on skates which is amazing! Although, some training sessions like the one I went to can be confusing it is still fun to watch and see them grow as a team!
Although I wanted to get more of her daily life I wanted to really capture her playing hockey because it shows how even though she has this disability she cans till do something she loves because she can be like everyone else! It just means she has different ways of doing it.
Here is another picture of her in control with the ball. How they play is because not all of them can swing their arms they basically use the electric wheelchair and spin to pass the ball to someone and continue on like that! Which was really cool to see!
Moral of this story is that even though you have a disability don't let that stop you from doing something you love! You got this and you're strong and you should be treated like everyone else and not judge for your disability!
Extra Photos
