Unsurprisingly, persons with disability (PWD) appear to want to manage how much of themselves they reveal to others, as do those who would not fall within that category as legally or medically defined. In the same way that those without disability choose to differentially disclose personal information about identity, preferences and plans depending on circumstances, PWDs also appear to want to disclose their disability and personal information under terms of their own choosing.
As part of a qualitative research exercise to learn how assistive technologies could facilitate independent living by the disabled (visual, hearing and speech, and mobility) in India, our researcher followed Prateek (not the real name), a male individual in his 30s who was fully visually impaired, on a journey from his home to Connaught Circle in the heart of New Delhi. Prateek walked through a busy metro station with his white cane, folded in his pocket. It was not evident that Prateek was blind, except for the fact that he bumped into a lot of people on the way in. At the security screen, the guards noticed the folded white cane and asked whether he needed assistance to board the train.
At this point, Prateek had admitted his disability and accepted the offer to be escorted to the designated carriage with reserved space for persons with disabilities. He had been guided with a hand on his elbow and helped into the correct carriage. The escort had informed the driver that a disabled person was on board who intends to alight at Connaught Circle. Prateek had been met and escorted to the exit, at which point the white cane had been again folded and put away. Prateek continued his journey, no longer overtly disabled.
Another PWD who was blind told our researcher that she goes out with similarly impaired friends, wearing dark glasses to hide the evidence of her disability. She walks with friends who carry white canes, giving the appearance that she is sighted and is assisting them. But when she can avail of a discount, she will take off her dark glasses.
Should we be surprised by these practices of differential disclosure of disability when we know this is how most people also behave? How can these behaviors be factored into the designs of the solutions that we hope will emerge from the hackathon that will be organized to make use of the research?
The Delhi Metro authorities are to be praised for the extra services they provide disabled passengers. Once the system is informed some customers are disabled, they are collected in a particular location and their names and destinations recorded in a book. After some time, a Metro employee will escort the gathered disabled passenger or passengers to the appropriate platforms, help them into the designated carriages and inform the respective drivers of their presence and destinations. They will be met and escorted out of the destination stations.
But this is only for those who declare their status. It is possible for a PWD who knows the stations well because of regular travel to avoid the slow escorted process and complete her journey independently without informing the system of her status or destination.
The commendable assistance provided by the Metro authorities is somewhat cumbersome. One may imagine a more streamlined system whereby beacons mounted within the stations would guide PWDs to their destinations through instructions displayed on their smartphones. The instructions would be tailored to the individual disability and destination, one pathway suggested for a visually impaired PWD and another for one in a wheelchair. If one wanted to go the toilet before or after boarding a train that guidance too could be provided. The indoor system could possibly be integrated with ride-hailing and map apps in a second phase to help PWDs continue their journeys seamlessly.
Would it be compulsory for PWDs to declare their status? In the same way there is no compulsion to disclose in the present system (except in cases where the disability is obvious), there is really no need to compel active disclosure under a more advanced system of the type described above. There would be no need for an additional step to register oneself as disabled. If the benefits are attractive enough, PWDs will use the system, as Prateek did.
However, system imperatives would come into play. There is value in analyzing aggregate use data, possibly pseudonymized, in order to improve the system and to address issues of liability and safety. Possibly such data could be used to train narrow AI [artificial intelligence] through machine learning, to improve the responsiveness of the system and its efficiency.
For example, if it is seen that a significant number of mobility-impaired passengers pass through a station at a particular time, it may be possible to have the appropriate connecting vehicles awaiting them outside. The space reserved for the disabled can be adjusted to demand. The pathways can be better designed, and so on.
This transaction-generated data can be collected from the card used at the turnstiles to obtain entry, unseen by others. To avail of the discount, PWD status would have to be disclosed anyway, possibly through some tag in the card itself. Perhaps information on the specifics of the disability and the destination can be unobtrusively communicated at this point, or through the smartphone during the journey or its planning. The time-consuming and clumsy step of recording disability and destination can be eliminated.
Prateek would not have to advertise his disability as he independently navigates the stations and the train using tactile pathways and designated carriages, though the system would have to know. Unlike today, no Metro employee would be holding his elbow, signaling he is a PWD. The technologically more sophisticated system would serve his needs better than the system it will hopefully replace.