Monday, 18 November 2013

Useful Aids Part 1: Introduction

This is the first part in a short series on aids and adaptations, so it seems a good time to explain my own personal position. 

When my disability first started to really affect my ability to function on a day-to-day basis, the first thing that I did was turn to a disability catalogue and see what was out there to help me. There were, and are, lots of ingenious things on the market to make life easier for people with disabilities. Many of these aids are very expensive. If I can improvise a cheaper solution, I often prefer to do so. 

It's easy to get so used to using an aid (sliding board, special cutlery, etc) that it becomes very difficult to move outside one's own environment - either I have to bring all my own cutlery everywhere I go, for example, just in case I decide to stop for a snack, or I miss out. Covering all eventualities can make for a heavy handbag! Wherever possible, I try to learn how to manage without aids, even if I do then use aids most of the time. 

All this stands within reason - if I can't adapt my way of doing something to avoid the need for an aid, can't make or buy a cheaper alternative, then I need an aid. In this case, there's often a choice, and I'd like to share with you, through this series, some of the aids that I do use regularly, why I use them, and some of the other options that are available. 

Finally, I'd like to remind you about why I need to use these aids in the first place. I have Ehlers-Danlos Syndrome, which means that my joints dislocate very easily. I don't have much strength or joint stability. I have breathing difficulties, chronic pain, a hearing impairment, dysautonomia, gastroparesis and dysmotility, bladder dysfunction, and immune/endocrine problems. I know others with the same condition who use far more aids, and others who use no aids at all. None of us are affected the same way by our conditions, and we each have our individual preferences as to how we deal with our impairments. This series is based on my own personal experience, so while I try to be objective, my opinions might be very different from yours!

While I'm preparing my list of aids that I love, why don't you tell me about yours? What do you find really helpful? What was a waste of space? Are there any aids that you'd sell your own grandmother to own?


There is an opera by Philip Glass about the development of Mohandas Ghandi's philosophy of Satyagraha. It's a compound word from the Sanskrit, meaning "Truth Force" or "holding onto the truth."

I was listening to the radio this morning, to a discussion of, among other things, Ghandi's early life. This word, Satyagraha, really struck me. It is necessary to hold onto the bigger picture in order to make change.

As someone with a disability, I encounter people who see themselves as victims, martyrs, or warriors. These people rail against the injustices and hardships faced by people with disabilities. 

Thinking about the Truth Force this morning has made me think again about why I feel so strongly about patient advocacy. I know that trying to make change from the point of view of a victim is difficult. I need to find a bigger understanding and force to hold onto, which will be the central driving purpose in my advocacy. 

What are your reasons for wanting to make changes?