“Innovation in Assistive Technology: Voice of the User” Buchanan et al (2019)

Coauthored by Ricky Buchanan (Australian pwME/CFS) and Natasha Layton (President, Australian Rehabilitation & Assistive Technology Association), this open letter was published in the journal Societies this week.

Abstract
This article is an open letter to assistive technology stakeholders from an assistive technology user perspective. Contemporary systems thinking in assistive technology identifies the interlinking themes of people, products, personnel, policy and provision. We add to the current discourse on these five themes through the voice of an expert assistive technology user, who states that “As a disabled person and as a long-time expert assistive technology user, this is everything that I wish you knew and everything I wish you would do.” Our objective is to provide a user-centered commentary upon current trends and innovations in assistive technology, illuminating real impacts and outcomes from a social perspective and adding a rarely-heard voice to the literature.

https://www.mdpi.com/2075-4698/9/2/48/html

 

There are assistive technology services in various parts of the UK but the services are geographically very variable and generally under funded. Historically the services have focused on specific physical disabilities, but they are potentially very relevant to severe ME. Often specific charities, such as the Motor Neurone Disease Association, raise the profile with their patient group also meaning specific patient groups are better served than others.

My knowledge is twenty years out of date but though the technology itself has changed dramatically in that time I suspect the service provision has not. An assistive technology service generally needs to be able to respond to very variable needs and one off adaptations, so a multidisciplinary team is essential requiring at least medical physics input as well as specialist OTs. Usually Speech & Language Therapist and Physiotherapy input are appropriate too.

 

Good idea. That would be a 'psychosocial intervention' that actually makes sense. Help patients connect online, be more independent through the use of technology, etc.

 

Wow, I think this is my first post here, I don't even have an avatar! Thank you all very much for your kind words about the article.

It's so mind-blowing that I get to do this - I got ME/CFS when I was doing my university undergraduate degree and at the time I wanted to be an academic … and then I got sick half way through my degree and now I'm 44 and I've never been well enough to go back to study or work since getting sick at 19, although I did eventually manage to do the very last little bit of the degree by correspondence …

It's AMAZING to me that people (especially Natasha Layton!) are so supportive of my desires and value my perspective enough that I get to do peer-reviewed publications like this even though I only have a bachelor's degree! I thought ME/CFS had stolen this from me, and it's so unbelievably cool … I feel like I found this awesome back door where I can sneak into the doing the fun bits of academia!

That is 100% a thing that any occupational therapist *should* do, but at the moment it depends on your having an OT who is familiar with the tech and thinks it's relevant to you. Hopefully over time this will become much more common!

- Ricky