When We Walk (USA, 2018) [CAAMFest 2019]

Jason DaSilva’s When We Walk immediately continues right where he left off with his first documentary When I Walk (2013), thereby also continuing his activist filmmaking. In retrospect, the titles of his two films are somewhat misleading; even ironic, perhaps, especially in view of the second film. They are, however, also a testament to the unflinching frankness with which DaSilva documents his life and body and the different, difficult relationships that his condition has prompted over the years. In these two films, DaSilva displays his gift in finding that extraordinary balance between the deeply personal and the deeply committed in telling his story and, by extension, expanding people’s understanding about the disabled and accessibility.

In his first film, When I Walk, DaSilva chronicles his day-to-day experiences with the onset of Primary Progressive Multiple Sclerosis (PPMS) in 2005 and the major life changes that it provoked, including the very making of the film. Though featuring the singular pronoun “I,” When I Walk is in fact notable for its joint authorship, insofar as DaSilva and his girlfriend-then-wife Alice Cook shares the status of both camera operators and the film’s object-subjects in the process of its own making. For while the film is undeniably about DaSilva witnessing double-fold his own body change due to PPMS and mentally coming to terms with such quickening change, with his own eyes and through the lens of the camera — and still again during the editing process — it was also very much shaped by the trajectory of meeting Alice, falling in love, and getting married, over and above his disability, and living a life of two. In many ways, the title When We Walk applies just as much to this first film.

In contrast, despite the plural and inclusive pronoun of “we,” DaSilva’s second film When We Walk is about the “after” in “happily ever after,” which for he and Alice means a separation, even after the birth of their son Jase. The film is, in fact, a video diary/letter from DaSilva to Jase, who is growing up in not just another state but one nearly across the country from New York. Though DaSilva wants nothing more than to be near Jase, it is not his disability but rather a broken, uneven health care system that prevents him from doing so. Due to the lack of continuity of Medicaid services from state to state, the kind of independent living that DaSilva is able to have — to make films, work on his nonprofit projects, and continue his disability activism — in New York would all but disappear if he were to move to Texas. To be near Jase in Texas, though with no more of a guarantee of being able to see him more often than if he were to remain in New York, DaSilva would have to check himself into a nursing home and subject himself to its schedule and (lack of) services. It is a doubly devastating situation in which to find oneself.

As in his first film, DaSilva in When We Walk presents a deft navigation between the incredibly personal situation of trying to maintain an emotional contact with his son on the one hand and the very sociopolitical problem of the lack of uniformity of healthcare services across the United States on the other hand. Linking these two issues is, of course, the aggressive pace with which his PPMS advances; by film’s end, he is a quadriplegic. Understandably, his PPMS injects a further urgency to DaSilva’s profound hurt of being far from his son, experiencing the strain that it puts on their relationship (the period in which the father-and-son Skype conversations are marked by anger/hostility from Jase is particularly unsettling to view), and his desire to bridge the geographical gap between them as much as possible. DaSilva tackles all of these issues simultaneously because, well, if he does not, who will? The ongoing lack of inclusivity for the disabled and the ongoing misperception that the disabled could not possibly desire or have independent lives conspires him to do so. So, in the face of his personal family issues and the abominable lack of disability services in select states (thus exacerbating and further limiting already limited access for the disabled), DaSilva is paradoxically even more active and adamant about sharing his perspective. For DaSilva has always identified himself as a filmmaker first and foremost, and someone with PPMS second.

In a recent letter to his son published in IDA’s magazine, DaSilva shares that he has now lost his vision. But does that make him any less of a filmmaker? No. In this regard, how DaSilva is able to continue making films and his advocacy work makes the title When We Walk less ironic: the “we” are DaSilva, people with disabilities, and the many people who help him on a daily basis “walk,” that is, live life on his terms, as much as possible.

When We Walk is showing at CAAMFest 2019 on May 12 and 18.