Archive: October, 2014

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Halloween Inspiration

Last year we featured some cool ideas for Halloween costumes that showcased wheelchairs. This year, we are going to share a few of our favourites from our Pinterest board to help your creative juices get flowing!

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A Teacher’s Mission

With my mom (left) at the Moncton  Walk for Muscular Dystrophy 2014!

With my mom (left) at the Moncton Walk for Muscular Dystrophy 2014!

“Never judge someone until you’ve walked a mile in their shoes.”

This saying resonated throughout my childhood, courtesy of my mother.  More than just a mother and teacher, she tried to instill lessons and values in my sister and me that no textbook can provide – be kind, compassionate, and strong.

Those lessons have stuck with me to present day.  Following in my mother’s footsteps, I pursued a teaching career in secondary education. I wanted, and continue to want, to make a difference in the lives of those around me. Yes, I am responsible for teaching curriculum outcomes about algebra, trigonometry, and geometry.  However, I also try to teach my students about the perseverance demonstrated by those living with a disability, and the difficulties these individuals face when living with a neuromuscular disorder. I do this in an effort to encourage compassion and raise awareness for muscular dystrophy.  I want my students to not view those with a neuromuscular disorder as disabled, but rather as mixed ability.  I do not look at my mother, or my former students with forms of MD, as unable to do a task; I admire the way they do similar tasks, just in a different manner.

Having a parent with Spinal Muscular Atrophy, I became involved with Muscular Dystrophy Canada at an early age. I was exposed to muscular dystrophy firsthand via my mother, but over the years met individuals like Nick Vidito, who was my first exposure to the effects of MD on a child.  Fast forward over 15 years later, and I am beyond humbled by my experiences as a daughter of someone living with a neuromuscular disorder.

When I started teaching at Riverview High School in 2007, I was aware that one of our students had Duchenne muscular dystrophy. A friendly student known to all, everyone spoke to him as he came through the halls. I was relieved to see a student like this so easily accepted by his peers. It gave me hope. That year, I started our first annual RHS Royals Walk for Muscular Dystrophy team. My grade ten homeroom class eagerly joined up, and we were able to fundraise over $1000. I thought to myself, “Maybe we can make this an annual thing.” And we did. In fact, over the years, my school team was able to become top team not once, but three times! I brought my mother and Jeff Sparks (National Directory of Volunteer Engagement and Organizational Development at Muscular Dystrophy Canada) in on separate occasions to speak to my team, hoping it would inspire my students to not only raise more money, but more importantly, understand how important advocating and supporting those with these disorders is.

I tried, and continue to try, to teach my students about the things that they may take for granted being able bodied teenagers.  For example, I would talk to them about the width of doorways and how they may not realize that some power wheelchairs do not fit through them easily or at all; or how the elevator was all the way on the other side of the school and if there was a fire, those students would have to rely on adults to help them down the stairs during fire drills.  Even things like how at some stores, the disabled parking spot is taken by someone who thinks that parking there for five minutes is okay because it is only for a short time.  I want them to be grateful for their muscles, their abilities, and help advocate for those who cannot take their muscles for granted.

The second year of our Walk for MD, I officially met two, twin, grade eleven girls living with Frederich’s Ataxia, another form of MD.  I knew their step sister, as she was on our first MD team and had told me about her sisters.  I had seen them maneuvering through the busy halls with their walkers, but did not put two and two together until one of them appeared in my grade eleven Math class a few years ago.  I had never heard of their disease, but knowing it fell under the umbrella of MD, I was curious.

Enter a tall, thin typical teenage girl. She was stubborn, sarcastic, and independent; I admired her for her strength.  I was told by the Resource Department to let her go a few minutes early at the end of each class so that she could make her way through the halls before the crowd of students flooded it.  She sat close to the door, allowing her easier access to get out if she needed to without causing a disruption. She never wanted to be an inconvenience to me or her classmates.  She sat in a regular desk and chair; I remember often trying to help bring her walker to her and she would tell me to not to worry, she could do it herself. Again, I admired her stubbornness.  I think that attitude is important when you live with a neuromuscular disorder – that fighter mentality is what I believe has allowed my mother to continue to walk despite what doctors say.

Neither this student, nor I, wanted her to stand out from the rest of her peers.  With inclusion in place in New Brunswick classrooms, all students were to be included in the regular curriculum.  Academically, she was intelligent and worked hard in class.  I provided her with class notes and handouts, as she struggled to take down notes as quickly as her peers.  I wanted her to focus on the content, rather than worry about whether she could get the notes down quick enough.  I knew that her disease did not limit her mathematical abilities; it merely meant we needed to find alternative ways for her to demonstrate what she knew.  Allotting extra time for assessments, as well as having a scribe for exams and tests, allowed her to do just that.  She fit in amongst her classmates.

I have to admit, I have been fortunate to witness how accommodating and understanding teenagers can be.  They’re often far more sympathetic to their peers’ needs than people realize.  That class did not treat her any differently. If anything, they would offer to help when needed.  I did not have to explain to them what she needed from us, as I knew she would be angry if I did, but rather, I would talk about my experiences working with youth at MD Walks and what they needed in general from society.  Having her in that class gave the class first hand exposure to how different life is for those living with a neuromuscular disorder, all while battling the everyday struggles of teenage life.

I had a great team of students that year, and I partly attribute it to that class.  We held fundraisers, the twin girls joined our team, and we celebrated a Top Team win that June. I stood back in awe that sunny, June day, incredibly grateful for those students.  Here were students who took time out of their busy weekends to attend fundraisers, raise money, and walk around Centennial Park all in support of muscular dystrophy.  Teenagers will surprise you if you believe in them.

Having taught, and met children with neuromuscular disorders at MD Youth Conferences, I continue to be inspired by their strength, courage, and resilience. While I may have never walked a mile in these childrens’ or my mother’s shoes, I walk beside them. I even run for them.

As a teacher, I am not sure who has learned more these past 7 years – my students or myself? Regardless, one thing is for certain, you can guarantee I will continue to try to teach my students the sensitivity demonstrated by my students that semester.  For any other teachers who have students in their classrooms or schools with neuromuscular disorders (or other disabilities), I strongly suggest finding out about the disorder or disability.  Create a supportive classroom environment, become involved, and focus on their abilities, rather than what the child cannot do.

Most importantly, teach kindness and compassion.

 _________________________________

Megan Crosby is a high school teacher currently teaching Math to adults in Beaconsfield, QC. Originally from Nova Scotia, she spent the last seven years teaching and living in Moncton, NB, where she taught and worked with students with neuromuscular disorders.  She became involved with Muscular Dystrophy Canada at an early age, volunteering and fundraising for her local Walk for MD in Kentville, NS in support of her mother, Joan, who was diagnosed with Spinal Muscular Atrophy at 23.  Megan loves to travel and run, competing in 4 half marathons over the past few years with her mother in her heart and on her mind.  An advocate for those living with disabilities, she tries to teach her students acceptance, patience, and compassion towards others, while encouraging them to give back to organizations like Muscular Dystrophy Canada in the hopes that some day they will find a cure!

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Jeff Sparks on Traveling with a Disability

Cruisin in the Carribbean

Cruisin in the Carribbean

Traveling is something that many people enjoy, but unfortunately, many people with disabilities feel that this is out of reach, due to accessibility challenges and people just not understanding.  Having lived with a disability for close to 40 years, I can guarantee you that this is not the case and that you all should make an attempt to travel.  There will be challenges to overcome, but trust me, it is worth the effort.  There is so much out there to see and do!

Over the last few years, I have had the opportunity to travel to Europe, New York City and taken four Caribbean cruises as vacations, and have traveled across our great country in my staff role with Muscular Dystrophy Canada.  Having recently heard three close friends of mine, Ken Kramer, Yazmine Laroche and Garrett Cumming speak of traveling with a disability at the 2014 Muscular Dystrophy Canada Empowerment In Action Conference, I became inspired to write a blog post to encourage everyone who is faced with a disability to empower themselves and see what is out there beyond our borders.

I want to provide you with a bit of advice and personal perspective, but I don’t want to repeat what has already been said.  I recommend that you visit the following link to get some great pointers on traveling with a disability.

http://muscle.ca/living-with-muscular-dystrophy/travel/

Paris Lock Bridge

Paris Lock Bridge

So, what else can I share, since I wrote the article above?

First of all, my stereotypes about countries beyond North America not being accessible enough to visit have been corrected.

  • During my Caribbean cruises, I’ve had the opportunity to visit about ten small countries.  Although it took some research to coordinate, I was able to ensure that my ships actually docked at the ports so that I could get off the ships and see the beautiful cities and countries.  In most places, I was able to book private excursions/tours.  I did most of this myself as many of the trips organized by the cruise companies are not accessible.
    • Advice – Research tour companies and wheelchair accessible taxi companies on the internet and contact them yourself.  Make sure that they define accessibility the same way you do.  Will their lift safely support the weight of you and your wheelchair and is there enough head clearance to get you in the vehicle?  Even try calling the local tourism bureau or Canadian Consulate.  In Antigua, their local rehab centre provided me with their van and driver for a tour at no charge.  Hey, it never hurts to ask!
  • Cruise ships rock!!!  The staff are always willing to help and accommodate.  Dietary restrictions were met to a T.  Accessible rooms have lots of space and roll in showers.  Some ships have lifts to get you in the pools.  There are no steps anywhere on the ships where there is not a ramp.  Although there is an extra cost, you can rent medical equipment such as hospital beds and lifts.
    • Advice – Make sure you are very clear on your needs when booking your cruise.  Ask about accessible excursions.  Confirm that your ship is docking at ports and not tendering (where you take a small boat to get to land).  There are some travel agents based in the US that specialize in booking accessible vacations.  You can give them a try, but I always like to be in control of my own destiny.
  • New York City is a beautiful place.  I’ve seen it and won’t be going back.  Most cities in the US have a huge number of accessible cabs due to the ADA, but as with many big cities, there is also a huge demand for taxis and you often need to wait.  I had a great experience getting the train in to and out of the city and took a great accessible cruise around New York where I got to see all the sites, but the long waits and difficulty in getting taxis was a little frustrating.  Having patience is a requirement to living with a disability, so if you want to see the awesome city, go for it!
  • Europe is a great place to visit.  I recently went to Germany, Amsterdam and Paris for my wedding and honeymoon, and would recommend that you visit.  Koblenz, Germany – the home of my wife Heidi – is so beautiful.  I was totally amazed when I visited the downtown core, which is 600 years older than my town, to find that every business had a ramp to get in.  Obviously, the cobblestone and brick sidewalks in most European cities makes for a bumpy ride if you are in a wheelchair, but we experience that in Canada too.  I was nervous flying a discount airline, knowing how well Air Canada takes care of me, but was totally impressed and would say that the service and accessibility was better than I’ve experienced at home.  I was even able to rent an accessible van for the trip, which you cannot do in most Canadian cities.  My wife was even able to find an independent living facility that was fully accessible to rent us a room during our visit.
Statue of Liberty with my Cousin Steve

Statue of Liberty with my Cousin Steve

Those are just a few highlights of what I learned and would like to share from my recent experiences traveling outside of Canada.

In addition to what advice was shared in the aforementioned link, I’ve also had some recent lessons learned from my own travel and from the awesome session at Empowerment In Action.

  • Make sure all your needs are documented fully with the airline’s medical desk.  I had a recent flight delayed because the flight attendant would not let me use my travel pillows and chest belt to support and secure me during the flight.
  • Although I’m too anal to do this, sometimes you make out just as well by flying by the seat of your pants.  If you are the type that doesn’t like to overly plan, take a risk and you may find you make out just as well as a planner like me.
  • Plan your travel companion/attendant well.  You are going to want to have fun together and not necessarily consider their whole trip to be work.
  • When you are faced by a challenge and need some help, it doesn’t hurt to use your “poor me” face.  You might even get bumped to the front of the line.  All kidding aside, being politically correct, we all need help in one way or another and it doesn’t hurt to ask.
  • Air Canada and WestJet now do not charge for advanced seat selection if you have a disability.  Both also have lifts to help you get on and off the plane.
  • If you have access to the funds, fly first class!

Well, that is all I have to say for now.  My closing piece of advice is to not be afraid of traveling.  There is so much out there for you to enjoy.

 

Planat has a great blog post about airport travel tips for those using wheelchairs, here.

Overlooking the Rhine River

Overlooking the Rhine River

______________________________

Jeff Sparks is the National Director of Volunteer Engagement and Organizational Development with Muscular Dystrophy Canada. He is a quadriplegic and relies on 24 hour attendant care, which he manages himself, for all physical activities of daily living. Diagnosed at 10 months of age with Spinal Muscular Atrophy Type 2, he was not supposed to live past the age of 2 years old. 39 years later, there is no slowing him down. 

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