Thanks largely in part to the wild-fire nature of social media, a bunch of people around the world challenged – and convinced – each other to dump buckets of ice water on their heads. And for a really good reason. The cultural craze was not only an effort to raise awareness of ALS (amyotrophic lateral sclerosis), or known commonly as Lou Gehrig’s Disease, but also to raise donations towards a cure.
Notables and celebrities even joined the challenge, including high-profile personas such as Bill Gates and President George W. Bush. All in all, “more than 17 million people participated in the challenge worldwide. In the U.S., there were 2.5 million participants who donated $115 million to the ALS Association, according to USA Today.
ALS slowly causes loss of muscle control due to degeneration of the neurons that control voluntary muscle movements. Perhaps the most recognizable person with ALS was scientist Dr. Stephen Hawking, who passed away in 2018. Rest in peace.
Like Dr. Hawking, one of the most common challenges for those with ALS is maintaining the strength and ability to communicate – undeniably the most important ability needed to maintain reasonable human function. Unfortunately, according to alsnewstoday.com, “approximately 80-95% of patients with ALS develop a speech disorder called dysarthria, which limits their ability to communicate.”
While more and more people are becoming aware of ALS, there is still no cure; however, technology advancements have allowed those who may lose their ability to speak still be able to communicate and not be forced to live silently.
Researchers have been experimenting with all sorts of interesting communication technologies, especially useful for ALS patients in advanced stages. In the event that maybe someday voice recordings could be leveraged into natural speech, people with ALS who still retain the ability to speak have the option to record their own words and phrases using AI voice recognition.
Basically, once the recordings are made, a computer recognizes which words the person is looking at on a screen, allowing them to pick the phrases and words they want to say and repeating them back in their own voice.
Image although not having full ability to speak but still able hold a meaningful conversation in your own voice. We’ve come a long way from the original robotic voice technologies that gave Dr. Hawking his quintessential identity. Either way, it’s a hopeful advancement for families who are seeking a better, more comfortable life with ALS.
Yet, even more, hope comes in from eye-tracking technology. One of the few ways that ALS patients communicate is by scanning a chosen list of words and letters using a computer. When the computer lands on the right word or letter, they can choose that selection by pressing a button.
Eye-tracking allows the user to operate a cursor with their eyes much like people use a mouse to click a selection. Using infrared-sensitive cameras, researchers have found positive reception of the technology among ALS patients.
This was famously how Dr. Hawking communicated from 1986 until his passing. However, eye-tracking technology, just like the technology used for voice playback, is becoming the technology of choice among patients with ALS.
And, as the technology improves its accuracy, it will be easier and easier for anyone with ALS to utilize.
For people who still have some control over small movements, researchers at MIT have invented a wearable device that detects even the tiniest of motions, in this case, the facial muscles, which might be all that someone with advanced ALS can manage.
When movement is detected, the user can then have a message played. The technology is so subtle in its reading of facial expressions and twitches that it can discern the difference between a patient trying to smile or open their mouth.
Anger, sadness, joy, excitement.. All of these feelings can be expressed simply with movement in the face.
Why are we talking about ALS?
Alas, even with super advances, people with ALS will still face some challenges using technology. Especially as our patterns change and we rely on more technology, like browsing websites to buy groceries, we must remember the importance of following the Web Content Accessibility Guidelines (WCAG) 2.0 best practices.
ALS might create difficulty for someone trying to navigate online pages, making it even more important that your website works with screen readers. Truly, that technology alone could make a world of difference. Additionally, if someone with ALS still has the ability to use their hands, it might be easier for them to navigate via a keyboard instead of a mouse, so be sure that the entire website is navigable with a keyboard.
At Hoverstate, we are passionate advocates of creating user experiences that not only delight but delight everyone. No one should have to experience the frustration of limited access simply because of a situation out of their control.
While ALS is a relatively rare disease, there is a tremendous amount of effort and progress being made to helping those affected live better lives while researchers look for a cure. In the meantime, we can all do our part to design websites that are thoughtful and accessible. It might be more work than doing the Ice Bucket Challenge, but it makes just as much of a difference.