Disability Aids - One Size Never Fits All

My Journey with a Wheelchair

Throughout my life, I have had eight wheelchairs, both powered and manual. I use both for different activities, such as the power wheelchair, which gives me more independence to go to work, take Oliver (my cute dog) for a walk, or go shopping. I have had this power wheelchair for almost six years, and I love it. The manual wheelchair has been a nightmare because my last Occupational Therapist (OT) didn’t listen to me about my needs.

OTs need to listen to their clients because they have a duty of care, and they are using government funds. Wheelchairs are not cheap, and unfortunately I have to try to modify this wheelchair to make it suit my needs. The number of times I have tried out new pillows and backrests is endless. Having to wait around for my new OT to come out and try to help me with this wheelchair takes time and money.

As my wheelchair is part of my extended body whenever I am awake, it needs to reflect me. I'm a very active and fashionable person. All of my equipment needs to reflect my personality; otherwise I won’t use it. I’ve had my manual wheelchair for two years, and every month, I have the OT out to readjust the brakes. I feel like the princess in the fairytale 'The Princess and the Pea' because of the number of cushions I have tried, yet none of them are comfortable. I wish just one of the cushions could be "the one." I am so far away from Goldilocks and the Three Bears; I can try seven, and none of them alleviate the pain you experience after sitting for 12 hours.

Another frustration has been the weight of the manual wheelchair. It is too heavy for most of my support workers to lift into the car. Most of my support workers are young women. They can easily lift me but have really struggled with my new manual wheelchair. I asked the OT in the first place to make the wheelchair lighter. I have almost learnt to be a wheelchair engineer over the last two years, and while learning a positive thing, it also takes time. 

My electric wheelchair battery is not charging properly. I contacted the company I bought it from. In order to come out and look at the battery, the company wants the invoice paid up front. This is problematic, as a wheelchair is like my legs; having to wait until they get paid first feels a bit discriminatory. For people with disabilities (PWDs), this equipment is like a body part. A wheelchair is their legs; without it, PWDs are bedridden or have to crawl around on their knees.

My Journey with a New AAC

We all know that I love to talk with my Alternative Augmentative Communication devices (AAC) . I wore out the battery on my seven-year-old device. The NDIS initially denied the purchase of a new one. However, after some negotiation and realisation of my needs, they approved it. This took about two years. In the meantime, I had to carry around the charger with me to keep it powered. When the new device finally arrived, guess what? It was too heavy for me to carry around. I was very disappointed and frustrated. I had to trial a different one, and luckily this one better suit my needs.

In the beginning, I had to try out many AAC devices because I didn’t want to carry around a brick, and most AAC devices are not fashionable. The button to turn on the new AAC is tiny and, to be honest, not ideal but as good as it gets.

PWD equipment isn’t one size fits all or even most on many cases. It would be ideal to have equipment that is easy to use, but that is just a dream. PWD equipment needs problem-solving skills, resilience, time and patience.

Conclusion

I’m sure everyone using disability aids has a story to tell: the frustration, the mechanics, and the specialist services needed to assist you; the adjustment period in getting used to new aids; the disappointments when the aid you were told would improve your quality of life doesn’t; and knowing you cannot just return the item and try a new one. Perhaps, like buying a car, it would be better if we could test disability aids before committing to them.