Why designing for disability is being ‘human’, not ‘humane’
Twenty-seven years ago my uncle died suddenly, not only leaving behind his family, including his unborn daughter, but a more extensive ‘family’, whose rights he had been fighting for since he was a teenager.
In Iran, my motherland, people with disabilities were second-class citizens, often placed into homes and forgotten about. There were minimal opportunities to advance their education and access a meaningful life. This didn’t sit right with my uncle, so he began a bold movement to change the prejudiced beliefs about people with disabilities in rural Iran. Education is one of the pillars of opportunity in life. Knowing this, he built a specialised school, catering to their specific needs, and trained teachers in the skills needed to work with the children and young adults. Before he passed away, he had just gained approval to begin integrating his students into mainstream schools — the first time something like this had happened in rural Iran, and a massive step towards social integration and acceptance.
I guess his heroic feat and unfinished business stuck with me over the years. My social conscience and radar for injustice are never on standby. So when Dmitry, a close friend of my brother-in law, told me about his cousin (see his blog post here) my eyes began to twitch and blood started to boil. For people with the most profound physical disabilities, there are no existing solutions to enable them to access basic human needs.
WHAT THE !!?
So, let me get this straight, almost 50 years ago we had the technology to send man to space and land on the moon, but in this day and age, we haven’t the brains to enable people to communicate effectively? That sh*t ain’t right.
And so began the journey of Thought-Wired. Dmitry, Konstantin, James and myself got together and thought, “if the tech doesn’t exist, we’ll build it”. We knew there was a problem, had some idea about the solution, but we didn’t really know the people very well. This ignorance was probably the most important realisation for us. We were just bright-eyed, bushy-tailed students. It meant that we had to immerse ourselves into the world of disability from the get-go.
[note: I speak of the “world of disability” as a purposeful distinction, as to this day, the way society is structured means that for many, “our world” is inaccessible to people with disabilities. Thank goodness for organisations such as Be.Accessible and Attitude Pictures — both championed by powerful women who have been affected by disability, who are working tirelessly to bring these worlds together].
This involvement completely changed our vision for Thought-Wired and nous™, our thought-controlled communication system. We’re so thankful to all the families, therapists and technologists who have been integral to the creation of nous™. You simply cannot build something meaningful and usable, without understanding the conditions, intricacies, complexities and relationships of the people you’re building your product for. If you do, you’re building for yourself, not your users. I thought that I had reached my emotional and empathetic peak when working with people with severe physical disabilities — I was wrong.
It’s another story when it’s a lived experience, and disability can strike anyone — unlike human behaviour, it does not discriminate.
At the end of 2015 my 5-year-old nephew, Arian, was diagnosed with terminal cancer, known as DIPG. It’s growing in his brain stem, meaning it will eventually stop his brain and spinal cord from sending messages to each other. He will be locked into his body, but completely conscious. A few months ago, a mother whose daughter also had DIPG posted on Facebook about how distraught she was that her daughter was unable to let her know she was struggling to breathe because of her body position. One of the first things my mum asked me was whether Arian could use nous™ to communicate if he reaches this stage. My heart sank when I realised that in a rudimentary sense, yes, we could probably let him use our well-worn prototype … but what about everyone else?
I’m not religious in any sense, however, I think of all of us as brothers and sisters. People with disabilities are no different from any one of us. They are our flesh and blood. It is our responsibility to create an inclusive world that offers them the same opportunities that it offers us.
This is not a guilt trip, it is a reality check.
In the words of the great jazz musician and poet, Sun Ra “it takes a notion to motion and a motion to notion”.
Be a mover and shaker, join us as a foundational investor in Thought-Wired, let’s bring our worlds together and transform the future of millions around the world.
**Special thanks & love to Catherine Reiss for her editing magic on this blog post **
