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Katie Sumners

Review of the Film When I Walk

User Review: Rating: 5 stars

Re: When I Walk (Official Trailer) - A film by Jason DaSilva and Alice Cook

Katie Sumners | October 02, 2015 at 12:10PM (edited)

When I Walk

Review by: Katie Sumners

 

 

            “When I Walk “ is an Emmy-nominated documentary film that focuses on the life of documentarian Jason De Silva and his struggle with Multiple Sclerosis.  The film was sponsored by Diversability, a social network forum that gets people with disabilities to connect with one another and those who want help raise awareness. Jason’s company he founded AXS Maps also helped to sponsor the screening of the documentary “When I Walk.” The audience for this film was comprised of people with disabilities that ranged from MS (Multiple Sclerosis) to people with hearing loss and also included able-bodied individuals as well who wanted to learn more about MS and disabilities. Even though the film focused on Jason’s struggle with MS, the film would resonate with anyone who has a disability and even hit home with people who have someone they love in their life that struggle with a disability.   
            The purpose of the documentary was to show the effects of MS on a person and how it plays into each aspect of their life. It focuses on MS because that is the disease Jason has, but it resonates with anyone who has a disability because they can see themselves in Jason’s life. The audience can see how life is difficult for anyone who has a disability through the eyes of Jason and what he shows in the film. Jason did a wonderful job not hiding any aspect of life with MS; he showed a very real and raw look at life with his disability. Jason’s message throughout the film was that there is hope, there is a way to compensate, there are ways to deal with a disability and there are ways to help those who have a disability live life to the greatest of their abilities.

            Going into the viewing of the documentary I had first hand knowledge of MS. I was diagnosed in May of 2012 with Relapsing Remitting MS, which is the first tier on the MS scale. Jason when he was diagnosed was diagnosed with Primary Progressive, which is the second tier of MS. I know about PPMS but don’t have first hand knowledge of how it truly affects someone. I know that as my MS progresses I am headed toward a PPMS diagnosis. My hope is that since they seem to have caught my MS early and I started treatment early that my MS will stay at RRMS and not ever progress. In watching the film I was not sure what to expect, since a lot times people with MS are not very open about their struggles with the disease.  I was amazed at how open Jason and those in his life were with the material that was included in the film. The film shows some terrifying moments to someone who has MS, or any disability, because you can see the fear, the uncertainty, and the longing for life to return to “normal”. That is a big theme throughout the movie, the idea of normal and what that is now to someone with a disability.  “Normal” now has to be redefined through the lens of a disability and we as spectators are now seeing what a struggle that truly is. I know personally that redefining normal is an ongoing almost daily occurrence now that I have MS.  Each day is new normal for me and Jason did a wonderful job of showing how to redefine each day as his new normal.

            The film opens with Jason talking on New Year’s Eve about how life is a box of surprises. We then see Jason on vacation 5 years earlier with his family on a beach with airplanes flying very close overhead. The plane knocks everyone down with the draft. We see Jason struggling to get up from being knocked down by a plane draft. He continues to try to stand and he can’t get up with out the help of his brother. We fast forward in the film to him struggling to walk a straight line, then discussing what MS is and how it affects him. He goes to have his gait tested and they discover that his gait changes every 10 minutes where non-disabled people’s gaits don’t change much at all over the years. His is changing every 10 minutes, so at the gait center they do not have a way to help him change his walking to make up for the gait changes. We then see Jason go the MS Center to try and get some answers. They start to discuss with him the use of a wheelchair; he’s frustrated because he just started to use a cane to help with his walking issues. Jason discusses how his life is changing due to MS; he is no longer able to go out on Friday nights to the local bars and do things with friends because he can’t get into those places using his wheelchair. That is going to be a major theme throughout the film is his inability to get places because he is now in a wheelchair and so many places in New York City at the time, were not accessible.

            The film continues with Jason going to India to film another documentary and finding he cannot complete it because he is having so many new MS symptoms such as optical neuritis that affects his vision.  While in India he speaks with an uncle who tells him that no one in the family has MS like he does. This is something that those of us with a disability have to deal with. We feel like we are the only ones because no one in our families has what we have. I just found out that my biological grandmother had Parkinson’s which is an autoimmune disease like MS but it’s not MS and no one in my family has MS. So like Jason, I am alone in dealing with this within the family structure. While in India, Jason decides to seek out treatments that might help his MS. He does yoga, gets special massages, drinks all types of herbs and teas, but in the end nothing helps the MS and he heads home disappointed.  His grandmother who is a devout Catholic pays to send him to Lourdes, France to the healing baths. He goes, and yet again leaves disappointed because the miracle baths don’t heal his MS. So he goes back to NYC and resumes his life in a wheelchair. He attends an MS meeting where he meets Alice his future wife.  Alice’s mother has RRMS and so she is familiar with MS but not really what is to happen to Jason as his PPMS progresses. Shortly after meeting Alice, Jason gets his first scooter. Alice wants to know what it is like for Jason so she rents a scooter and they go on a tour of a museum. The two of them take a trip to Hawaii where they realize they are falling in love with one another.

            The film begins to take a hard look at what a relationship is like with someone who has a disability. Jason and Alice have several hard conversations with one another about what it means to deal with MS. Alice is very honest with Jason and tells him she is not sure she is okay with the idea of having to feed him in public and do everything for him as he declines. This is a very hard moment to watch because with a disability this is something that we all think about. Will someone love us enough to deal with this disease and all it brings? I have had this conversation with a few people in my life and seeing this play out on screen brought home all the emotions of learning to trust someone to love my disease and me. As the film continues we see that yes Alice is capable of extraordinary love for Jason and adapts very well to his disease.

 Jason and Alice move to Brooklyn but they are finding it very hard to get out and go anywhere because there are still not a lot of accessible places. They cannot take the subway because at this point in time there were no elevators to get down to the subway. Being in NYC and riding the subway I can see how difficult it is for a person who has to use a wheelchair or even canes or crutches. The subway cars do not line up evenly with the platform and not all stations have elevators to get down to the subway. There have been a few improvements but there is a long way to go in making subways wheelchair accessible. During this time Jason is still searching for a miracle to help cure or even make his MS better. He has a few procedures done but none of them produce a cure or even a way to make his MS better on any level. There is always a search for people who are disabled to find a cure and to make life better but reality is that most of the time none of these miracles turn out to be helpful. But we keep fighting and searching.

            Jason and Alice finally get married in 2010. They then decide to see if they are able to have children. This is a very big discussion for anyone with a disability who is of childbearing ages. This is an extremely big decision for anyone who has a disease that might be hereditary and with MS there is no proof either way. So Jason and Alice find out that they are able to have children and they are ecstatic. During this time while they are trying to conceive Alice tells Jason she needs a break because she has been his primary caregiver for 2 years. This is another conversation that is so hard to watch because you can see the guilt Alice is feeling and the pain Jason is feeling because he can’t be left alone and he knows how much of toil it has taken on Alice and their relationship. Having these conversations is always hard for those of us with a disability because we know we are a burden on our loved ones at times. We know that they love us, will do anything for us, but it is tiresome to have someone care for you 24 hours a day, 7 days a week. We know they need a break but we also know they feel guilty for feeling that way. A break is necessary at times for everyone to remain sane and to continue to deal with the disability.

Alice gets pregnant and she continues to help Jason with making this film because he is to the point now that he can no longer see to read, and his motor skills are slowly failing him. He is having a difficult time moving the mouse and cannot type at all any longer. Alice is helping Jason film and his scooter dies, meaning Alice has to push to Jason around the city. She remarks that she’s pregnant and shouldn’t be doing that. Jason agrees but in reality he can’t move so there is no one there to help but Alice. During filming Alice notices blood, and she has a miscarriage. The miscarriage gets bad and she has to go the hospital in the middle of night and Jason cannot go because there are no cabs to take him in his wheelchair.  This is yet another disappointment for them because the city is not equipped to deal with disabilities. Alice has to deal with this on her own because Jason cannot be there with her. This is when they both decide that things have got to change in the city. This is where the idea of AXS Maps is born. They decide that they need a way to find places that are accessible.

Jason and Alice work diligently on finding a way to get the information gathered for accessible places. They are finishing up the film and Alice is having to most of the manual labor work on the film because Jason can no longer move his hands to type or move the mouse. He is able to talk through things to help Alice get things in the order he wants them. As the film wraps up we see that they Alice is pregnant again and they are having a baby boy. They have created AXS Maps, it is now in use and people are able to map out places that are accessible. Jason is working on the follow up to this film, making a new film titled “Dismantled” and Alice is working full time with AXS Maps.

            This film spoke volumes to me as I watched it. I was able to see how living in a city with hardly any accessible options makes life so much harder. I cannot fathom living in a city like New York City with a disability. Things have improved in the city but it is still hard to get around if you have difficulty walking. I was only in New York City for a short while and as a tourist but I found it difficult to get around, so I cannot imagine if I had to use assistive devices to help with that. No matter what someone’s disability is they can relate to this film and the struggle of Jason and Alice. This film is exceptional is it’s ability to bring to light the issues that face those who have a disability and how hard it is to live in society where people do not see the need to have accessible locations in and out of all buildings and places where people travel. The film was able to put a real face on the struggles of living with a disability. Overall this film needs to be watched by everyone so that they can learn just how difficult life is for those with a disability and also so they can see just how much people with a disability are able to thrive and have a very normal life, as long as places and people are willing to make the effort to help them achieve that goal. I would recommend everyone who works with the ADA see this film so they can gain a better sense of what life is like for those who are needing the accommodations that are made by the ADA each and every day. 

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