Thirty Days of Thanks Day 11 – My Living with MD Friends

As soon as I knew my trip to Australia was a sure thing, I began to plan. As I have mentioned before, travel logistics for the disabled adult are more complicated and time-consuming than for most non-disabled adults. While some people may be able to just get up and go, or have flexibility of flights and destinations, I require more advanced consideration.

I had been to Australia twice before my most recent trip, but for each of those visits I was using a manual wheelchair. I fly frequently within the United States using both a manual and power wheelchair. But my trip in March was the first international trip using a power wheelchair.

I began my research online, utilizing the connections I have made through a Facebook group called Living with Muscular Dystrophy (LWMD). The group is a private peer-support group of adults from around the world who are living with any of the neuromuscular diseases covered under the umbrella of Muscular Dystrophy or ALS. Group members discuss many topics including personal care assistants, medical equipment, travel, health care, and employment. The goal is to help one another navigate a world which is not always accessible for our needs.

Some of my first connections were with group members from Australia. Julie was helpful in answering questions about accessibility in Sydney. She explained the train system and offered feedback on potential options for finding a wheelchair charger. Sadly we were never able to meet in person while I was there, but this just means I have to make a return trip.

So many people offered tips on traveling internationally using a power chair. Cory Lee and Alice answered questions and referred me to others who might be able to help. Carol put me in contact with several people in Australia who provided information about renting an accessible vehicle and traveling within Australia.

There were others who had ideas about how to charge my chair, accessible restaurants, and where to find family assist restrooms in the airports we would be visiting. All of this knowledge made me more comfortable as I traveled.

There is much literature about the value of peer networks for marginalized populations, including people with disabilities. I have been blessed to have access to many peer support networks throughout my life. Because LWMD is based on-line, people who may have difficulty leaving their homes due to disability, lack of transportation or lack of adequate personal care are able to participate in virtual discussions. The collective knowledge and creativity of this group astounds me. When one group member asks a question, people are quick to respond with suggestions and ideas. As a rule, people with disabilities are some of the most creative people I’ve ever met. We have to be. It’s how we adapt to a world not designed for our needs.

To my fellow LWMD-ers – thank you so much for all you did to help me prepare for my trip earlier this year. I appreciate your insights and your information. Your creative ideas were perfect and you made problem-solving a breeze. When I needed support, you were my virtual cheerleaders. And when I had success, you celebrated with me. I am grateful to be a part of this unique family.

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