by: Laurie Proulx

Like so many of you, I’ve learned to deal with this disease. I was diagnosed with Juvenile Idiopathic Arthritis at the age of 14. Hardly a day goes by where I don’t feel pain in some part of my body. But I’ve learned that there are always a few more surprises this disease will throw me.

I never recognized the symptoms. I was used to feeling pain in my hands, feet, shoulders, knees, hips and every other obvious spot where there is a joint. In the past, I recalled feeling like I had a lump in my throat and I would get a sore throat for no apparent reason. I would suddenly lose my voice but never had any trace of a cold. This had been happening for quite some time. I remember these symptoms first appearing in the second year of university, which is more than 15 years ago. I never thought of discussing these symptoms with my rheumatologist.  Boy, was I wrong.

When I became pregnant, I stopped my RA medications. I thought the pregnancy would go well and that I would go into remission, similar to my pregnancy for my first child. Things didn’t go as well this time and I had to go on prednisone.

I first started having difficulties breathing in my eight month of pregnancy. I had a cold which improved on its own except my breathing was still laboured.  I was admitted to the hospital three times in the final five weeks of pregnancy. The Internal Medicine team was stumped. No one knew why I was having difficulty breathing. I was diagnosed with asthma but my lungs seemed fine. One day before my baby was born, the doctors suspected my breathing problems were as a result of a flare of the cricoarytenoid joints (the cricoarytenoid joints control the opening and closing of the vocal chords. A flare would impact breathing and/or the voice). I knew I was at the end of the road. I needed to concentrate intently for every breath. If I got upset, angry or cried, I wouldn’t be able to breathe. I was terrified for me and my baby.

My airway just kept closing in until I could no longer breathe.  My blood pressure spiked to 220/160 and I had a seizure. I crashed but luckily I was being prepped for a caesarian section. I think somebody upstairs was smiling on me that day as we both could have died. To this day, I can hardly believe how my baby boy is just so perfect.

After the surgery, I was admitted to the Intensive Care Unit and when the breathing tube was removed the next day, nothing had changed. I was sent for emergency surgery for a tracheostomy. A week later, I went home with a newborn baby and a tracheostomy tube in my neck.

So the next time someone says that it’s “just arthritis’, tell them the story of me and my baby boy.

Demonstrators demand better transit access in Montreal

by Marie-Eve Veilleux

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Montreal is one of the least accessible cities in Canada. Among the challenges faced by disabled people is that the metro system only has 7 accessible stations out of 68, all located on one single metro line (see map of the accessible metro). At the current rate, the Montreal Metro would be fully accessible by 2090. In comparison, the Toronto subway is scheduled to be fully accessible by 2025.

On July 25, disabled activists and their supporters gathered at the Place-des-Arts metro station to demand change. Accessibilize Montreal, a local disability rights group, planned the demonstration during the Just for Laughs festival to reach a maximum of people and raise awareness that accessibility is not a joke, it’s a necessity!

A group of about 40 disabled people and their supporters stood outside the station, distributed pamphlets and asked people to sign postcards that were sent to the Prime Minister. Meanwhile, five activists sneaked onto the platform of this inaccessible station with their wheelchairs and scooters. They built a fake elevator and asked metro users to take the elevator with them to raise awareness about the absurdity of being unable to get out.

With about 50 people in attendance, this event was one of the very few of the last few decades to unite such a large number of disabled people and their supporters for a common cause. Even if the media coverage was limited among traditional media, the public response during the action and on social media was positive and supported disabled people. The photo presented above shows where activists briefly blocked the stairs at the metro station. This photo was shared and liked on social media by hundreds of people who would not usually get involved in issues concerning disabled people. Organizers were also pleasantly surprised that the event was featured by international disability initiatives, including the Disability Visibility Project.

For more photos and to see videos of the demonstration filmed by CAPA member, Marie-Eve Veilleux, check out this Website documenting the event:

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Photo: Magdalena Olszanowski