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The countdown is on to #YIAatlantic!

YIAlogo_Atlantic-EYouth In Action Atlantic is coming up from August 19-21, in Moncton, New Brunswick. As the lead organization, Muscular Dystrophy Canada, in partnership with the New Brunswick Disability Executives’ Network and the New Brunswick Premier’s Council on the Status of Disabled Persons, is hosting this three day summit, funded by Government of New Brunswick and TD.

The event is bringing together teens and young adults across all disabilities and all Atlantic provinces – and Quebec too.  Sixty youth aged 14 to 30 are stepping out of their comfort zone to explore post-secondary and career options. #YIAatlantic will be both interactive and informative!

Educational sessions, panel discussions and social events pepper the schedule of the conference. Atlantic Canadian universities and education agencies will be on hand at Friday’s Post-Secondary Education Expo, while local supports and resources join the mix at Saurday’s Community Supports Marketplace. #YIAatlantic’s engaging agenda and resource-rich environment is strong encouragement for those in attendance to continue to learn, expand their horizons, and build a system of supports. Peer networking, in the form of a dance party, will surely be the cherry on top of a wonderful weekend!

MDC Ambassador Luca ‘Lazylegz’ Patuelli will bring his No Excuses, No Limits motto to the dance floor and the podium, and Canadian television legend Mary Walsh (This Hour Has 22 Minutes) will bring her advocacy for mental health and addiction to the agenda. Our friend Maayan Ziv will also be on hand to lend her perspective on accessibility, technology, and blazing your own path. To see the full list of amazing speakers participating at #YIAatlantic click here.

It is sure to be a fun, informative, and inspiring weekend! Keep your eyes on the following social media channels for insight during #YIAatlantic (track this hashtag too)!

twitter.com/MDAtlantic

twitter.com/MD_Canada

facebook.com/Muscular-Dystrophy-Canada-Atlantic-Services

facebook.com/muscle.ca

You believe in youth with disability, right?! Please sign up to Thunderclap TODAY to commit a social media post to our campaign. With your help, on August 20th, thousands of people across Canada will boost the confidence and morale of youth with disability as they map their future and plan for independence. Join the movement, show your support, here.

Visit www.yia-aj.ca for more information on the conference.

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On the Job

tumblr_ndyvqwykza1tubinno1_1280Whether you are just starting your job search or you have been in the workforce for years, finding employment opportunities can be a challenge if you are living with a neuromuscular disorder.

Looking for your first job

It can be difficult to break into the labour force and gain work experience, especially for youth with neuromuscular disorders. So how do you find the right opportunity?

(more…)

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A Week in the Life: The Western Region Services Team

Here's Ted putting some things together for EIA back in August.

Here’s Ted putting some things together for EIA back in August.

“What exactly are you doing this week?”

It’s a question that we hear often, which is good because there is so much to do! To rise to the challenge and provide a better answer than just ‘information and referral’ services, Nate Schwartz (our main man on Vancouver Island) and I decided we would capture what were up to over a one week period.  It was fun to look back on how we are serving persons living with neuromuscular disorders and it’s our pleasure to show you some examples of our interactive and diverse days!

We were ‘out’ there to make those community connections. 

We truly believe that the lives of the people we serve are constantly changing and so we try to make as many community connections as possible.  Just last week Nate got in touch with a local physiotherapy clinic that needed some insight on how to provide better services to people living with a disability.  For myself, I was also asked to meet with various startup businesses on how they can make their services more affordable for people living on limited income.  These types of meetings are exciting to us as you get to see how so many different organizations are making a genuine effort to better serve our clients.

We connected people to our resources and community networks. 

If we don’t have the answer to your question, then we will find someone who does! Nate had a great opportunity connect a youth now starting his university experience with local campus resources and contacts.  I had the opportunity to work with a few educational leaders on how to connect their field staff with available MDC materials to improve their practice.

Nate (centre) with volunteers Debbie and George

Nate (centre) with volunteers Debbie and George

We supported our fundraising partners as “John(ies) on the Spot”!

Raising funds for our organization is a tough job and we value that service tremendously.  Last weekend the BC Services team had the pleasure of supporting the BC fundraising team during the annual provincial Firefighter Advisor Leadership conference.  We got to engage the firefighters, mingle with families, move tables and chairs, collect tickets and even install a raised toilet seat! It’s all in the name of team work—“You call, We haul”

We were constantly working behind the scenes so that others can succeed.

A great deal of the work we do in the community is a combination of hard work and preparation.  Nate’s an amazing motivator, so his webinar prep work and client follow up needs to be carefully thought out and planned. You just never know when someone will decide to kick it into high gear, so Nate always has to spend some time preparing to catch that lightning in a bottle!  For me, I’m working continuously to make sure conditions are optimal for the services staff so that they can be their own lightning in bottle.  Day in and day out, they serve our clients with grace, dignity and style, and it’s important to me that we provide them with that opportunity to be at their best with what we have.

So there you have it! It is equal parts of community engagement, team work, networking, planning and a 100% rock n roll.  If you’re curious about what we’re up to, just strike up a conversation with us and if you need a toilet fixed, we just might be able to take care of that too.

Cheers

 _________________

Ted Emes, Director of Services-Western Canada. To learn more about the services Muscular Dystrophy Canada offers, click here.

Nate Schwartz, Bridges to the Future Coordinator. To learn more about this unique program, click here.

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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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EIA Panelist Maayan Ziv on Living Life to the Fullest

Maayan

Maayan Ziv

Among the many sessions, workshops, and panels at Empowerment In Action are many inspiring and knowledgeable people who are looking forward to sharing and connecting with attendees. Maayan Ziv is one such speaker. She will be participating in the ‘Living Life to the Fullest’ panel. Maayan is an accomplished photographer, recipient of a Queen’s Diamond Jubilee medal, and is looking forward to traveling to Vancouver, BC to share experiences.

So what can you except from her participation in the panel? “I would say that I will be giving a truthful, and raw perspective of my life, along with its challenges and successes,” states Maayan.  “I’m going to tell it as it is – answer any questions as honestly as possible and share my life’s story that’s brought me to where I am today.” (more…)

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