10 September 2012

Life in waiting

Sometimes, I think about a relative, who is disabled, and his wife, who also uses a wheelchair. I never imagined how different the pace of life could be when one is disabled, compared with the pace that I am used to. It was only when I went for a day out with them that I came to realize that people who are disabled have much less flexibility in managing their lives. Not only that, they have to spend a lot of time waiting.

To go out using the Rehabus (a vehicle with a hoist for wheelchair users, organized by the Hong Kong Society of Rehabilitation), they have to book in advance. And if the time and date they need the bus service are not available, they have to wait for the next suitable time slot. Otherwise, they can’t go to whatever event they intend to attend. Unlike those with healthy bodies, they can’t always take the bus, the underground or any other form of public transportation.

Yes, they can book a private taxi with a hoist that accommodates two powered wheelchairs, but there are not many taxis like this, so they are not always available. Also, they are relatively expensive, which is an inhibiting factor for many people who are disabled.

Over the years, my relatives have adapted to a way of living in which waiting for their turn has become a part of life. As an able-bodied person, I am always on the go and in charge of my time. If I need to get to a place for which no bus service is available, I will catch a taxi. I will explore whether a place I need to visit is served by other means of transport, how I can get there the fastest—subway, ferry, minibus, etc.—what the connections are and how long it will take. Then off I go. But my relatives have to arrange for transportation well ahead of time. Mostly, they request Rehabus to come and pick them up at a prearranged time and place. There is no such thing as a spur-of-the-moment outing. Choices are much more limited.

Before we went on our outing, we planned the day in advance. We estimated how we would spend our day. But they were only estimations. Although it was possible that we would finish our excursion ahead of schedule, there was nothing we could do to save time, so we went ahead with our plan. All we could do was wait. We waited for a pick-up after movies, after going to the mall, after a family meal, and so on.

The Rehabus schedule dictates their pace of living whenever they go out. If they book transport to pick them up after dinner at a family gathering, they may need to leave midway through the event. As much as they would like to spend more time with everyone, they have to leave, because the Rehabus only runs up to a certain time in the evening.

Through spending time with my relatives, I have come to appreciate how people with disabilities go about negotiating the pace of their lives. It is only through these experiences that I have come to realize that independence has different meanings to people with different levels of physical ability.

I have also come to realize that it must be the same for all vulnerable populations in our society. Not only do people with disabilities have their life schedules governed by external factors and timetables outside their control, but they must make adjustments to their planning and wait their turn. For example, say the elevator can only take one wheelchair at a time. Because they may not be able to run up the stairs, they have to wait for an elevator that is empty enough to take them to their destination floor. In a way, Darwin’s theory still rings true: Those who are fittest get it all.

Three people in wheelchairs wait their turn for an elevator.
What considerations should we bring to the forefront when designing infrastructure for an all-inclusive society?

For Reflections on Nursing Leadership (RNL), published by the Honor Society of Nursing, Sigma Theta Tau International.