Disabilities can Enable (and other Digital Paradoxes) - The Simon Stevens Story

This inspirational story and life changing lesson has multiple and seemingly paradoxical dimensions. It is a about a young man called Simon Stevens who has cerebral palsy, needs a wheelchair and has a home carer. I first encountered Simon over 20 years ago when I ran a community informatics project about the use of digital technologies for building social and economic health in rural communities.

As part of this project, I pioneered the use of webinars to connect inspiring local and international social entrepreneurs to share their stories. I even ran a breakfast radio program called “The Radio with Pictures Show” that combined community radio with virtual classroom technologies so that people could access these stories on the radio or via the internet or even, in one case, by satellite telephone in the Artic region.

Simon Stevens was one of my guests on a webinar about technology and entrepreneurs. I had heard about Simon and his use of technology to support his entrepreneurial endeavours and had received an email from him with a presentation attached that explained how he was using technology as s social entrepreneur to support people with disabilities.

The email and presentation he sent me was very professional and articulate so I had no hesitation in replying to his email and booking him a slot on the webinar without ever meeting him or even speaking to him on the phone. What happened next will always live in my memory.

Disabilities can Enable

When it came to the webinar, the first time I heard Simon’s voice was just after I welcomed him onto the webinar with the words something like “My guest today is Simon Stevens who will be talking about the use of IT for disabilities”. The split second Simon spoke, my heart sank because his cerebral palsy had given him a speech problem which made it almost impossible to understand. Now I was faced with running a 30 minute webinar interview with someone I and my webinar delegates would find difficulty in understanding.

What emerged from this potentially traumatic and stressful experience was that, through the slides he shared on screen, he could communicate his message very effectively despite his disability (or possibly as a result of his speech problem), he had developed powerful communication skills and the ability to create compelling slide presentations.

This humbling experience taught me that the challenge of overcoming a disability can very often enable skills and abilities which those who are fortunate enough to have no disabilities never achieve.

Enabling Technologies can Empower

Around the time that I first encountered Simon, there was a radio program called “Does he take sugar?”. The title of this program summed up what life must have been like for Simon. His cerebral palsy, skull cap, wheelchair and speech made people assume that he was retarded or incapable of interacting and so he suffered terrible prejudice and challenges throughout his whole life. The arrival of personal computing and the internet was an amazing enabler for Simon which gave him the power to be treated, online at least, like everyone else. Perhaps because of this, he had developed keyboard and mouse skills that far surpassed most people.

I kept in contact with Simon through an e-newsletter and one of my e-newsletters whilst I was working at De Montfort University included details of a virtual world called Second Life which allowed users to create their own avatars and virtual worlds. This embryonic metaverse technology added a new dimension to Simon’s life which enabled him to create his own virtual alter ego avatar and meet other people online in the virtual world on a level playing field without any stigmas or visible disabilities.

What intrigued me about Simon’s avatar was that it was a mirror image of himself, complete with skull cap and wheelchair. I had imagined that he would make his avatar different to his real self but Simon wanted people to accept him for himself and understand what it was like for someone in a wheelchair with cerebral palsy.

When I started developing the Serious Games Institute at Coventry University, I invited Simon to be a member of our project team and it led to a truly memorable project meeting which we held virtually in Second Life in our virtual boardroom. At this time, Second Life only had text chat (no voice) so we all communicated and ran the meeting in text chat whilst we could see everyone’s avatars in the room.

This meeting in an early metaverse was truly one of the most productive project meetings I have ever been involved in. Not only, through text chat, were we able to get through business quickly, we had an automatic record of the minutes of the meeting.

One of Simon’s entrepreneurial ventures was a virtual nightclub he built in Second Life. It was called “Wheelies” and amongst the club rules was that all visitors had to use a virtual wheelchair. Simon successfully organised many club nights in his virtual world and he became an international celebrity because of his pioneering work.

Some Enabling Technologies can Disable

The Second Life Metaverse continued to evolve with additional functionality during my time at the Serious Games Institute (SGI). One of these additional functionalities was Voice over IP (VOIP) which enabled players to talk to each other whilst they were together in their virtual world. Although this was an enabling technology enhancement, for Simon it was a potential disabler because his speech problem would once again become apparent and perhaps result in some of the prejudices he had endured all his life.

Simon’s story inspired me and helped shaped my views on disability and enabling technologies. If you have a similar story, please share it with me.