Updated: Sep 28
This blog post is going to be slightly different from my previous ones as it's not going to be about testing but it's still related to technology. Last month, I was given the opportunity to conduct an interview with Lifelites CEO Simone Enefer-Doy where she talked about what Lifelites is and what types of assistive technology they donate to kids with disabilities. This is an organisation who is using technology to do something good and improve the quality of life of kids with disabilities. It's really interesting what they are doing so I hope you find this write up inspiring.
Can you tell me a bit more about Lifelites?
"Lifelites is the only charity that donates and maintains assistive technology for the 10,000 life-limited and disabled children using every children’s hospice services across the British Isles. Our aim is to ensure that, whatever their abilities, they have the chance to play, to be creative, to communicate and control something for themselves, for as long as it is possible. We fundraise and donate and install it, train hospice staff how to use it and we maintain it to ensure it is kept in good working order for these children for whom every second counts."
With the impact of COVID-19, how has this affected Lifelites and people with disabilities?
"Due to the Covid-19 pandemic, in common with most organisations, our plans to donate our life-changing packages of technology to this year have all but been put on hold. Funds raised have also been drastically reduced. Unable to visit the hospices to provide training, we are now looking at developing online courses for hospice staff. Once the lockdown was lifted and hospices allowed selected people into their buildings, our tech team was able to visit hospices to donate tablet computers and repair equipment. Many children’s hospices have been especially thankful for the adaptive iPads which they used for virtual play and therapy sessions for the children in their own homes. This helped the children to escape isolation and reconnect with carers and friends. Some hospices have lent our technology to families so they can use it in their own homes during isolation."
What are some of the technologies that Lifelites donates to people with disabilities?
"It is frustrating for children to be locked in a body that doesn’t do as it’s told, so we aim to donate a diverse selection of assistive technology to help the children join in with the world around them. For example Eyegaze is especially life-changing for non-verbal children with very limited movements. It enables them to play and communicate through a computer when maybe all they can control are their eyes. A sensor recognises the child’s eye movements which translates into a cursor moving around the screen.
The Mobile Magic Carpet is particularly amazing for those children who have difficulties moving. It projects scenes which the children can actually interact with onto the floor, their wheelchair trays or their beds. So for example, children in wheelchairs can move around the image and kick up leaves or play football with their brothers and sisters. We often hear stories about how it relaxes children who are agitated or encourages those who have difficulties to move.
Soundbeam enables children to create music with little physical movement which can be recorded and shared with the parents to create invaluable memories. With our Virtual Reality, children can escape into a world of make believe and have experiences they never dreamed of. We also donate accessible gaming equipment together with the PS4 and Xbox which gives the children a feeling of control and movement they would never be able to experience without the help of Lifelites."
Can you share some inspiring stories as to how Lifelites have helped people with disabilities?
"I often say that my job is about making life-limited children with disabilities smile, and we are treated to so many moving experiences, thanks to LIfelites technology. All children are eager to tell their families every thought they have, and run around to burn off their seemingly endless energy. I believe there is no reason why this shouldn’t be the same for life-limited and disabled children, but more often than not, that just it isn’t possible for them.
We met a young boy called John Junior, or JJ. He used to be a lively boy, able to explore the world and go to school, just like any other child. But when he was diagnosed with adrenoleukodystrophy (ALD), he slowly began to lose the ability to see, walk and talk, and is now completely dependent on his family and carers. Being able to use Eyegaze has given JJ the chance to do things independently for the first time in years, without needing help from his parents or carers. Eyegaze has given him the chance to bring creativity and control back into his life. He used to love playing the drums before his condition deteriorated, but now he can enjoy the Drumbeats program on Eyegaze. His mum said it is wonderful to see his eyes lighting up, and his body changing to be more relaxed as he becomes more engaged. For JJ’s family, it is a great way to socialise with him.
For Madison, the Mobile Magic Carpet provides a space for her to safely and confidently move around and explore new things. Madison has Down syndrome, a chronic lung disease, is oxygen dependent, and has a low immunity. With our Lifelites-donated Mobile Magic Carpet, she can comfortably move around, explore the bright lights and play with the moving bubbles around her and escape the confines of her conditions for a while. The bright colours and music lift her mood in a life which gives this very young person so much to cope with.
Troy has Spinal Muscular Atrophy Type 2 which is a genetic neuromuscular disorder that affects the nerve cell that controls voluntary muscles. While he can communicate well and is able to see, Troy is unable to stand or move his arms himself and relies on his parents and carers for all his personal care. He loves using the Lifelites-donated gadget which can connect special switches to many electronic devices, such as kitchen equipment and toys. It means he can control things like a kitchen mixer or a fan, simply by having his hand put on the switch."
With the rise of digital technologies, this has opened up opportunities for people with disabilities to access wealth of information. Do you think web accessibility has improved nowadays?
"I have no doubt about that. When I first started working with people with disabilities in the 1990s, it would not be uncommon for them to be put in a corner without any stimulation or attempt to communicate with them. But with the advent of specialist technologies, it’s a whole different ball game. Without accessible tools, it would be impossible for many people with disabilities to have access to the online world. Eyegaze turns an everyday computer into a usable tool, even for those with the most complex disabilities, giving them access to the internet when the only part of their body they can move is their eyes. It gives them the chance to explore the world around them. Our Lifelites patron Sarah Ezekiel is a wonderful example of how web accessibility has improved. She was diagnosed with MND in her thirties. Her condition deteriorated and now she can only move her eyes. However, she has been able to live her dream of becoming an artist, writing emails and giving interviews about her life and work - and that’s all thanks to Eyegaze. There is a huge movement among the tech companies like Microsoft and Apple to make their facilities available for people with disabilities and it’s very exciting to see how far things have come."
What is the most common accessibility barrier that you have observed?
"I would say that there are very few accessibility barriers which can’t be solved with technology. So many children using children’s hospice services are locked in bodies that don’t do as they are told. They are unable to control their movements or speak. But with the technologies Lifelites donates, even something as simple as an iPad, they are given the chance they may never have imagined to play with their families and enjoy themselves, just like any other child."
What’s one piece of advice or learning you would give to anyone about accessibility?
"The only barriers to accessibility are our imaginations. Over the years, I’ve found that if someone cannot move or speak in traditional ways, that can often be solved by technology. And nowadays, whatever it is you need, you can bet there is an app for that. I am constantly excited by the developments in technology and what they mean for people with disabilities. To quote George Bernard Shaw: “I dream of things that never were, and ask why not?” Why not, indeed?"
Can you provide information for anyone who’s interested to help Lifelites in any way?
"If you are interested in helping Lifelites, there are many ways to get engaged. Especially during this challenging time, we need donations to help us to keep doing what we do and help make a difference to the lives of these children. Particularly now, we need people with skills in online and remote learning to help us reach hospice care staff now that we can no longer visit the hospices. To give your donation online, please visit our website or email firstname.lastname@example.org for our bank details. You could become a corporate partner to share skills with us and fundraise with your colleagues. If you are particularly interested in fundraising for Lifelites, please get in touch with Sam, our Head of Fundraising, by emailing email@example.com."