Washington DC

Monday 5 May 2008

We have been really blessed with fine weather on our travels, and today was no exception. It started off a bit more exciting than usual with the fire alarm system going shaking me out of my slumber. I immediately pulled on some jeans, grabbed my bag and heading for Jill’s room. I was knocking madly on door but the siren was so loud I couldn’t hear anything, and the door wasn’t answered, so I assumed Jill had already exited. However, as the other guests and I were milling around in various stages of night attire, groggily trying to figure what direction the stairs were in (we would have been burned to a crisp if there had been a real fire) I figured that Jill would have real problems getting down 4 flights of stairs. Things were soon back to normal – the alarm being triggered off by something to do with the renovations currently taking place – and I went in search of a blackened corpse . . . This time Jill happily opened the door to my knocking and I grumpily made sure she knew where the stairwell was. It’s not as though there aren’t emergency exit signs everywhere, but who reads them? (Me, from now on!) And when you’re not quite with it and in a bit of a panic, it’s easy to become disoriented.

After breakfast, I set up the computer for Jill to do her “Jottings” and caught a shuttle to Union Station where I intended to have a really good look around as it is the only place I’ve been to look at shops so far (apart from airports). I’m not really a ‘shopper’ but it is interesting to compare merchandise from place to place. I found a gift shop that featured arts and crafts from American artisans and came out quite a bit poorer for having bought 2 pairs of earrings by the same artist and a brooch for my mother. Well, at least they won’t add too much weight to my luggage.

By then it was time to meet up with Jill, who was being dropped off by another shuttle, for a taxi ride to the Banana Café and our luncheon meeting with Wendy Wilmer (President) and Elver Ariza (Board Member) from The Polio Society. The Banana Café is renowned for its Cuban, Mexican and Puerto Rican Cuisine, and we all had something interesting while sitting in the sunshine. Wendy was very interested in finding out all about how we work things in Australia and shared some of what was going on for The Polio Society. Their Board of Directors, made up of 9 members, meets on a quarterly basis and operates on a similar basis to our Australian ‘Networks’ except they do not oversee support groups. According to their Mission statement, The Polio Society aim “To make a difference in the lives of people who have Post-Polio Syndrome and other polio-related problems. We provide education and resources to polio survivors, their families and caregivers along with health care providers, policy makers, and others who affect the well-being of people who had polio.”

Wendy contracted polio in 1952 as an infant and after the age of 8, did not wear or use any assistive devices for several years. She works as an actor and has always had a very active lifestyle. Wendy was in her mid-30’s when post-polio syndrome (PPS) was first mentioned and she has since taken to wearing a leg brace and using a walking stick, as well as a wheelchair from time to time. She has periods of “hitting the wall” fatigue and, in typical polio-style, knows she does far more than her energy levels can support. Wendy became involved with The Polio Society because she is a keen advocate for disability rights. She became the President in 2007.

We also learned about Elver Ariza who, at only 38 yo, is one of the younger polio survivors on the Board. Elver was born in Colombia and contracted polio in 1969 at the age of 6 months. He was lucky to survive the illness due to the lack of medical resources available to his farming parents. Through sheer determination, they got him diagnosed and stabilized at Columbia’s “Roosevelt Institute”. He went on to obtain a Master’s Degree in Food Engineering from the University of Bogota and found work in his field. However, Colombia proved to be a difficult place to live with a disability. This, together with development of PPS, made Elver seek further opportunities in USA. Without being able to speak a word of English, he moved to the US on a student visa in 2001 and studied computers, international business and economic policy. He is still on a student visa but continuing to apply for a change in status so he can find permanent, paid employment and qualify for medical insurance. At this stage, Elver has to pay for every service and piece of equipment he needs.

Discussions led to the problems that many ageing polio survivors and related groups are facing and that is about how to keep on keeping on. The Polio Society is challenged by the need to fundraise, find new members and keep ‘old’ ones, delegating work amongst the members who are all experiencing some form of PPS symptoms, and trying to remain relevant and informative for their members. Of course, there are no easy solutions but success does tend to rely on being able to access a number of dedicated, multi-skilled people to work together. As the old saying goes, “Many hands make light work.” Although there seems to be a belief that polio survivors are a “dying breed”, there are still many younger people like Elver, and even those who are experiencing symptoms but are unaware that PPS even exists, who will need to access information and resources in years to come. Polio survivors I have worked with claim, “We’re not dead yet!” and I hope to play my part in ensuring services are available for as long as needed.