Living with a disability, the role of technology in my life

By Dr Ossie Stuart

 

I will start by stating the obvious. Technology has always played a key role in my life as a disabled person. Whether it is a lightweight wheelchair, an electrical wheelchair or even a specialist bath with a powered seat attached, technology has always been an important enabler in my life. By this, I mean that it has simply made my life easier and me more autonomous.

Please note I that did not say, ‘more independent’. Often people ascribe a piece of technology that is useful for a disabled person as ‘enhancing their independence’. I disagree. To me, ‘independence’ means the ability to make choices for myself, just like everyone else. For example, when to get up in morning, what to eat and what to wear. The freedom to make these choices without a third person interfering is what I would describe as independence. I am paralysed in all four limbs, so independence is something I cherish above everything else. On the other hand, technology provides for me with greater autonomy to do things I wish to do in a way that suits me best.

In the past technology for disabled people has mainly been designed by disability specialist and only obtained via gate-keepers, such as Occupational Therapist. The latter being the ‘experts’ on the needs of disabled people.

An example of this is Motability. I drive a vehicle converted to enable me to do so. It is laden with technology that has been provided by specialist disability engineering companies. During a recent conversation with a vehicle conversion specialist, he said that he feared that the new assistive technology that carmakers are now adopting will put him out of work. I am afraid, I had to agree. Future cars that more-or-less drive themselves would need far less conversion to enable a disabled person to use, and this is theme of this short piece.

Modern technology is now enhancing my autonomy in ways that disability specialist technology could have never done, and at a greatly reduced price. I can obtain this technology practically anywhere and without any reference to any gatekeepers or disability specialist providers. In fact, this technology is not even designed for disabled people at all.

I can think of two good examples that clearly illustrates this. ApplePay, the electronic payment system that allows you to pay with your smartphone, and Smart Home technology, which allows you to control, monitor and regulate your home from an app on your smartphone.

For me, personally, these two technologies have transformed my life. I am a single person and live on my, yet I am limited to a wheelchair and cannot manipulate small items such as money or even switches or buttons. In the past when I wished to go shopping, I had a few options. Either have somebody accompany me, to shop for me, or to hand over my wallet to a stranger to take the money out for me to pay. I found all these options frustrating and stressful in equal measure. Now, I am able to leave my home when I choose and make the purchases I wish securely and, importantly, on my own, all via my smartphone. This new freedom cannot be understated.

The smart home has been equally liberating. As I live on my own, this meant that my PA (a carer for those behind the curve) had to switch off all the lights, set heating, close the blinds and shut the windows before they left. Also, if I had an unexpected visitor after going to bed, I would not be able to communicate with them easily. All that has now changed. With the equipment purchased commercially from venders that anyone could use, my life has been transformed.

Now, I can go to bed and control the lights and, if I choose, leave the windows open and the blinds too. I can now see who is outside and communicate with them, and even decide whether to let them into my house or not. All this has been made possible with Smart Home based technology that relies upon Wi-Fi, computers and smartphones. Suddenly, I am now able to make decisions about how I live that I was not able to do before.

Now, there is a downside to this. Social care funders have been used to funding specialist equipment for disabled people that has been provided for them by gatekeepers. In my experience, iPads, Smart lighting and even assistive technology on cars, such as blind spot monitoring and parking assistance, have been viewed as luxuries that are not appropriate for disability or Social Care funding. If this view exists it is mistaken.

These are not luxuries. For disabled people they are massive enablers that enhance autonomy and, yes, independence. Ironically, this technology is relatively cheap when compared to the specialist equipment often offered. This is because it wasn't designed for disabled people, but the public at large. For the first time disabled people can benefit from the lower prices that comes with greater sales.

Social care commissioners should listen very carefully to people who use social care services. They will point out that a life-enhancing piece of technology is not a luxury add-on, but essential to obtaining a higher quality of life.