‘What’s the point of communication devices if you have nobody to communicate with?' This question is posed by patients who are completely paralyzed and cannot speak. Many of the problems of people with disabilities are societal in nature, not technological
What use is a communication device if you have no one to communicate with?
Last week researchers from the UMC Utrecht made the headlines all over the world (New York Times, New Scientist, RTL Late Night) with a medical breakthrough: sensors implanted in the brain enabled Hanneke de Bruijn, a completely paralyzed woman with late-stage ALS, to operate a communication program. Although such BCIs (Brain-Computer Interfaces) provide much hope for people with disabilities, some critical comments should also be made. Are these BCIs better than the technologies already available? Do you dare risk brain surgery if your thoughts are all you have? What use is a communication device if you have no one to communicate with? And what is the point of developing BCIs when there are hardly any patients alive who can benefit from them?
Technology alone cannot be the complete solution
As a neuropsychologist, over the last few years I have had many discussions with patients I have been investigating about the requirements for innovative assistive technology for people with severe physical disability and communication problems. Our discussions have revealed that technology alone cannot be the complete solution for people with diseases like locked-in syndrome (LIS), amyotrophic lateral sclerosis (ALS), Spinal muscular atrophy (SMA), or those with high spinal cord injury. Because many problems are societal and not technological.
“BCIs are nice and all”, said one of the patients, “but when will you [scientists] invent something to change society?”. People who cannot speak due to muscular or brain disorders have a hard time making new friends. “People often react spastically to people with a disability”, is what Wim Tusveld, the late chairman of the Locked-in Syndrome Workgroup, would say. Technology is not the answer.
They’ll do anything to avoid a conversation
On the contrary, technology can add to the problem of alienation: people who cannot speak are often happy with the communication technology available to them, but experience a stigmatizing effect of their equipment. Not only are you in a wheelchair, but there’s a joystick in front of your lip and a large black alarm button by your head in case of emergency. This equipment might put people off, especially if they don’t know what it’s for. “Some people just turn their back on you”, says a former musician with locked-in syndrome, “they’ll do anything to avoid a conversation when they see you and your whole technological entourage”. Ironically enough, the same technology that was intended to let these people participate in society can actually result in exclusion.
Design is essential in promoting user satisfaction
Assistive technology often has a painfully rudimentary and awkward design that conveys the message that robustness and functionality have priority. However, we have found that esthetic and personalized design are essential in promoting user satisfaction, identity maintenance, and inclusion. Identity and image are all the more important when you’ve lost so much of yourself due to a muscular or brain disorder.
How this benefit weighs against the risk of brain surgery
The project at Utrecht UMC is a welcome and positive example in that sense: we are thrilled that this technology is invisible. It is inside the body. People will see the person first, before they see the disability. It will be a personal choice how this benefit weighs against the real or perceived risk of brain surgery. One patient stressed: “I will NEVER EVER risk the one thing that is flawless, in other words my brain, in brain surgery. 100% DEFINITELY NO!!! MUUUCH TOO VALUABLE”.
To benefit from a BCI, you have to be alive
Another requirement for the usefulness of innovative technology is more fundamental: to benefit from a BCI, you have to be alive. This cannot be taken for granted. At the beginning of the disease ALS, patients are often confronted with dark prospects of the future – perhaps excessively dark. Physicians and healthy people often think that a life with long-term ALS will be a life not worth living, while scientific studies have shown that quality of life can be satisfactory or good in late stage ALS, even when an individual requires artificial ventilation. With artificial ventilation patients can continue living for another 10 or 20 years. Thus, if high tech is seen as an option for people with ALS and we invest money in it, shouldn’t we then give people an outlook on their disease which is compatible with scientific evidence?
It should be available for all patients
A final requirement for innovative assistive technology is that it should be available for all patients, not just for the rich and well-educated. As one person put it: “At the Support Fair we are teased with new technological gadgets and pretty (yes, please do make it pretty!) assistive technology. However, if these types of gadgets are subsequently not covered by our health insurance, or are only covered for a small group of people, then that is just leading us on. I see the risk here as well, because it will obviously be expensive surgery”. So, it is crucial that policymakers and health insurers deliberate about this technology early on and provide an honest perspective for patients.
Social change is also needed
In short: we applaud the technological advancement, but it is not a panacea. Social change is also needed.
- Femke Nijboer, assistant professor, Health, Medical and Neuropsychology Unit, Institute of Psychology, Leiden University and currently L’Oréal -UNESCO Fellow at Netherlands Institute for Advanced Study (NIAS-KNAW)
- Jacqueline Kool, Disability Studies Nederland, with firsthand experience of SMA
- Dick Cochius, with firsthand experience of SMA, werkgroep De Rode Bril
- Paul Trossèl, entrepreneur, with firsthand experience of locked-in syndrome
- Nicole Tromp, with firsthand experience of SMA
- Paul Coops, with firsthand experience of spinal cord injury
Reference to article from UBM Utrecht:
Fully Implanted Brain–Computer Interface in a Locked-In Patient with ALS. Vansteensel, Pels, BleichnerBranco, Denison, Freudenburg, Gosselaar, Leinders,., Ottens, Van Den Boom, Van Rijen, Aarnoutse, Nick F. Ramsey. New England Journal of Medicine, 12th of November 2016.