When We Walk is a follow-up to the Emmy-Award winning film When I Walk. It is the second part of a documentary trilogy that follows the life of filmmaker Jason DaSilva as he deals with Primary Progressive Multiple Sclerosis. When We Walk takes place six years after the events of When I Walk, and documents DaSilva’s struggle to stay close with his son. In the process, he ends up on a trip through the challenges of a broken health care system and the threat of powerlessness facing all disabled people.
The DIrector’s Statement
(The BIG Picture)
I have been in a state of crisis for the past three years. My health is declining, you moved away from me. Had I been able to see into the future, I would have done everything to keep you with me. When you left, I had the ability to use my hands. I am now quadriplegic; I cannot use my arms or legs. These days, I drive using a head mount on my special wheelchair. I turn left or right and go forward or back, just by moving my neck. I know the time we have together is limited.
My son, I think about you all the time.
I want you to grow up with me.
I want you to know me.
I want to be an active part of your life.
I want to be there whenever you need me.
I want to be able to watch you at your soccer games, school plays, and musicals.
I believe that a father and his son should be around each other.
I want you to know that there is no one I love more than you.
Take a step back with me, you may not understand all of this yet, but you will as you grow up. I know that you are going to grow up to be a smart and inquisitive individual. So I have no doubt that you’ll be able to comprehend what I’m about to break down below:
Currently, New York Medicaid provides me with 24/7 in-home care. Recipients like me would lose their benefits if they move to a new state. After they move, they must reapply, a process that may take 6 months to 3 years. Additionally, there is no guarantee that they will be accepted. Even if they are accepted, they may suffer a decline in services.
If I move to Texas, to be close to you, once I received my Medicare benefits, they would only cover a maximum of 48hr/week. With such limited coverage, I would have to be placed in a nursing home. If that happened, my life as an independent filmmaker, activist, and a contributing member of society would end. The drastically reduced level of care available in nursing homes would mean the loss of my mental and physical well-being.
I know this firsthand because I actually checked into a Texas nursing home. No one was available to help me do basic things when I needed them like using the restroom, eating or making phone calls. Tasks relating to my filmmaking and advocacy work like writing, responding to emails, and editing, were impossible. It was difficult to make arrangements to see you. I was not free to be the father I want to be for you.
As a filmmaker, I created AXS Lab which gives a voice for people with disabilities through its storytelling and its transmedia projects. Through filmmaking, I try and do what is right.
Primary Progressive Multiple Sclerosis has been a consistent challenge, to say the least. When I first started, and diagnosed in 2005, I documented my challenges on film with When I Walk. Now I continue telling our story through When We Walk. In the past year of post-production, my vision has deteriorated. It’s been difficult because I’ve had to watch the film on a magnified screen and give my director’s commentary to the editor, all while having a heartbreak of you not being around me and restarting a new life on my own. If you look at the medical charts, on my EDSS score, I’m a 9 out of 10. I have a blog post discussing more about this that I’ve linked below if you want to learn more. For me every day is precious, being around you, my son is precious. Some things I do know:
- I cannot come to you because I live in New York and people help me 24/7,
- If I could, we would spend as much time together as possible but we cannot, and
- When We Walk will be my legacy to you.
- Jason DaSilva, Director