Video blogging

Hi all,

Happy holidays!

I'm posting short videos related to the making of the film.

Here's the most recent video:



Jason

A Time To Reflect on MS

It’s a cool, grey fall day – the perfect day to write a blog entry. I’m in Denver, Colorado – tomorrow morning, I’m in a photo shoot for the National Multiple Sclerosis Societyfor the new “Move It” campaign. Speaking of “move it”, I’m only here for one day and then returning to New York, where I’m living, to continue production of my documenetary, When I Walk – http://www.wheniwalk.com , which is about my experiences having MS and exploring research being done about MS. I started the film in November of 2007 and it will continue until 2010.
New York is a crazy and fast-paced city. People moving quickly, car horns blasting, constant stimulation. I live in the East Village and spent my days working on my film. I am very lucky to have had a career of ten years to date as a filmmaker, starting when I was just 20-years old. When I was twenty-five, I was diagnosed ith primary-progressive multiple sclerosis. My reaction was, “ I’ve heard of it I think it’s bad, but I’ll figure it out and be back to normal!” I thought I was invincible.
Over the next three years, I did two more documentaries, and finished graduate school. As primary-progressive MS often can do, my symptoms were worsening. Every day was a new adventure – will I be able to see properly to film with my camera? Will my walking be adequate to do what I need to do today? I learned (by trial and error!) that I didn’t want to overtire myself and pace my energy for the day.
One day late last year, I said, “ Enough is enough – I’m making a film about multiple sclerosis.” I wanted to share my unseen experiences with the world about the often-misunderstood world of MS, and share with others with MS my findings. Importantly, I wanted to show what it’s like to have MS as a young person. We face some challenges to our experience with MS that aren’t necessarily shared by the MS population: dating, early career path, young friendships, and balancing the future…the list goes on.
So here I am, in the middle of the production of “When I Walk” and I have to say I am so happy I’ve made the decision to do this film. Every day, I learn something new about MS, and about myself – things that I will beb able to share with others through the showing of the film. What can I say as advice to those young people with MS? “Stay strong and do the things you love to do! Life does not stop with MS, it actually just begins – the path may need to be accommodated, and enjoy it, it’s a great and adventure-filled path!”

Afterthoughts on the election

I have a free moment as I sit in a bus going uptown. I know it's been some time since I've blogged- it's just that the film development and production work has been eating at my time.

What's been going on? It's hard to do a recap! Every day with MS is an adventure. I guess I had the first really good sleeep recently. The morning after Obama was elected.

A recap of that night- went to see the election results happening in Tribeca with some of my friends.. Absolutely magical. Returning home In a cab, everyone was out yellng, '"Yes, we can!" crossing by St. Marks up first avenue, there was no room for traffic beecause young people filled the streets. As I drove by, slowly, hands slammed the top of the cab and high-fived me, yelling, "Obama!"

I've been doing some things pre-election. Here's an email I sent out a few weeks ago:

Dear all,

In connection with Barak Obama's campaign website, I had a video made on me by their media team. As you may already know, I have had multiple sclerosis for four years now. After my return to New York after graduate school, I found difficult times wading through the poor state of the American health care system, which prevents coverage to over 50 million Americans. With the number of uninsured Americans at an all-time high, Barak Obama's health care policies are a breath of fresh air to our current climate – and are very necessary.

You can view the video here:



And a write-up on healthcare and my video on Obama's site at:

http://my.barackobama.com/page/community/post/amandascott/gGxGFb

Thanks!

Jason

Guest Blog: The Facts and Fictions of Multiple Sclerosis

When I used to think about Multiple Sclerosis I invariably thought about a person in a wheelchair – usually that person would be Caucasian and a woman. I had little knowledge about what MS is, what parts of the body it affects, who gets it or why they get it. Being with Jason as his disease progresses and helping out with the film have been real eye-openers for me and I have learned so much. So I thought I’d share some insights into MS – and separate myth from reality.

FACT: MS is the most common disabling neurological disease that affects young people.

Multiple Sclerosis is a common disease – the United States has more than 400 000 cases of Multiple Sclerosis alone. In MS, your immune system attacks your nervous system which leads to a destruction of myelin. Myelin forms a sheath which protects your neurons – so when the myelin sheath is destroyed, your nerves are affected and cannot function properly. Common symptoms of all forms of MS include: gait and walking problems, spasticity, loss of vision, tremors, balance problems, a decrease in cognitive functioning, bladder and/or bowel problems, fatigue, weakness and depression.

However, it is important to note that no two people are alike and symptoms experienced vary widely from person to person and depend upon a variety of factors – what type of MS you have (whether it is relapsing-remitting or progressive) as well as the location of lesions.

FICTION: Having MS means you won’t be able to walk and will end up in a wheelchair.

It’s not necessary that if you have MS you will end up in a wheelchair. Depending on the trajectory of the MS, you may be able to get along just fine without a wheelchair. A person with MS may need to rely on canes, walkers or wheelchairs depending on how their disease progresses. The point is, there are many devices (good ones!) that are available to help you out so you can carry on with your day-to-day living with minimal disruptions.

FACT: There are 4 types of MS.

There are four types of MS. Relapsing-remitting MS, which affects 85-90% of those with MS, is characterized with periods of acute attacks in which symptoms flare followed by periods of remission. Those with Secondary-progressive MS start off by having Relapsing-Remitting MS but then face a neurologic decline without definite remission periods. Primary-progressive MS (the type that Jason has) affects about 10% of individuals who undergo a steady decline of without any relapses. Finally, Progressive-relapsing MS describes those who have relapsing episodes along with a progressive neurological decline – this is the most rarest type.

FICTION: MS is a life-threatening disease.

This is totally false! Research shows that people living with MS have a near-normal lifespan when compared to the general population. The medical community has made a lot of advancements into MS over the years. There are now many drugs that are proven to manage MS symptoms and help slow disease progression. Complimentary and alternative therapies, such as massage therapy, physical therapy, speech therapy, acupuncture – as well as regular exercise and strength training- can help individuals with MS live a healthy and full life.

To view Jason’s trailer for his upcoming film about MS, visit: http://www.wheniwalk.com/

For more info about MS you can visit the following websites:

http://www.nationalmssociety.org/

http://www.mssociety.ca/

Posted by Kamal Arora

Nazi Germany and F.D.R.

During the process of investigating the history of the treatment of disabled people, I came across some facts which bring to light the unequal treatment of people with disabilities. For most of the twentieth century, erasure of people with disabilities has historically been achieved through cultural practices, such as institutionalization, isolation, genocide, concealment, segregation, exile, eugenics, quarantine, and prosthetic masking.

Under Adolf Hitler’s Nazi regime, a mass eradication of disabled people was enacted. The regime’s first victims were more than a quarter of million children and adults in Germany and its occupied territories. Public health agencies, private physicians, schools and treatment centers were obliged to report every person with a disability. Once turned over, they either were killed or used as test subjects for various unorthodox and cruel experiments by the science factions of the Nazi regime. These experiments involved bizarre and inhumane acts as forcibly removing a person’s teeth, removing the blood from someone and replacing it with gasoline, and various cruel genetic experiments. Along with Blacks, Hispanics, Jews, and homosexuals, disabled people did not meet the race requirements of Nazi Germany. They were either cleansed from society by genocide or given to science for such experiments.

At the same time, in North America, popular culture response to disability was gaining headway. A fascinating character in his approach to his own disability, Franklin D. Roosevelt was quoted by his physical therapist as saying this: "I'll walk without crutches. I'll walk into a room without scaring everybody half to death. I'll stand easily enough in front of people so that they'll forget I'm a cripple." He made a point to present himself as non-disabled to the general public. There was a two-pronged philosophy he enacted to hide his disability, applying these to all the appearances he made in media journalism and public events. His first was to carry the self-confidence associated with leading figures in politics; and second was to avoid disrupting visual expectations of bodily normalcy. His determinations are speculated to be informed the negative visual rhetoric of people with disabilities in Nazi Germany. Pro-Nazi American papers used F.D. Roosevelt’s disability as leverage for their own lobbying during the war.
More than half a century after the longest-serving president devised his strategy for success, the development of the mass media and above all of television makes it impossible for public figures to hide a visible disability in the same way.

Interestingly, Roosevelt’s political life was not only portrayed via the news media. The film Sunrise at Campobello (1960) follows Roosevelt from the time he contracts polio, to his faltered walking, to the speech that began his career in politics. Although Roosevelt hid his disability from the American public, Roosevelt performed his duties from his wheelchair.

What is Disability?

Before I started this film project, I had to ask myself: What is disability? The medical field usually focuses on disability in terms of impairment due to a sickness - disability that leads to suffering and disadvantage. The medical model focuses on 'curing' the disability or the illness rather than looking at the social factors that people with disabilities face. Lately however, a new area called 'disability studies' has emerged. Disability studies starts where the medical model leaves off and looks into the oppression and discrimination that people with disabilities face.

My research for this film began with me thinking about my place as a filmmaker with a disability. Looking to the disability community and the artists producing within it has inspired me to produce this film about my experience during this time. I started my research by looking at other artists with disabilities, in order to understand their work within the art world.

I feel that within the disability community, art practice is a method of reflection, and is self-empowering. Like other minority groups such as cultural and racial minorities, women, and queer communities, people with disabilities have finally begun fight for equality within society. I hope that my film is one way to bring to light the struggles that people with disabilities have to face on a day-to-day basis.

Personal Career to When I Walk

My first short film, Olivia’s Puzzle, was completed in 2001 and exhibited it in its first major festival just after the World Trade Center towers were attacked. Subsequently, I moved to New York to start my first full-length film, Lest We Forget, which focuses on the racial profiling of South Asians, Arabs, and Muslims after 9/11. During this production, my walking became slower and off-balance at times. In 2005, after a series of tests, I was diagnosed with Multiple Sclerosis, though I expect I had it for years before that. A rarer form of the disease, classified as Primary-Progressive, it is not treatable by medication normally prescribed for the disease. This slow progressing disease is having a massive impact on my life, causing my walking to become more difficult and distorting my vision. The latter has been difficult to cope with as a filmmaker. While my symptoms were slowly worsening, I managed to complete two more films.

Finally I am in production on my third film since my diagnosis, When I Walk, and I put my experience with having Multiple Sclerosis to the screen. The short film spans the course of four months as I try to find ways to continue to walk. The film uses my personal narrative as an anchor to weave in and out of interviews, explanations, and findings on Multiple Sclerosis within a jigsaw puzzle of incidents. The story follows my journey as I come to better understand the disease and develop a strategy for the future. When I Walk, through a cinematic journey, provides information and inspiration to those affected by Multiple Sclerosis and their supporters.

SUMMER APPROACHING

It's getting hotter and hotter. Today was very hot...but two days ago wasn't. I walked from University and 13th to 2ns and 11th in the cool night. Heat in NYC for summer is not such a good thing for MS.

Today, I went to an amazing dance production called Momix. Taking photos with Jonny afterwards, I felt pretty tired. I actually fell over in front of the dancers. Embarrassing yes, but dancers are the best people to fall around because in a production like theirs, it happens regularly.

What else have I been up to? A lot. Hanging with old friends. Setting up the film website. Yesterday[, I helped into interview Neomatrix for a Sear commercial at Jay-Z's studio off 6th avenue.

Everyday is exciting. Disease or no disease. Life is good. It passes by fast.

Prom night sauntering

I left the house at 1:30 to see limo after limo after limo traffic jammed in front of the apartment. "What's going on?" I asked a group standing outside. "Prom night." Ah, prom night. I walked from 2nd to 1st avenue along 10th street, then back on 11th street, with limos occasionally passing by. East village is a destinstion spot for the kids these days? Who knew?

A Blog? A Step Back To Reflect

I'll be using this blog to conjure up memories that float deep in my head. I've been meaning to do this for some time. And now I have a moment in time.

Walking Back Home

I walked back home - Union Square to 2nd and 11th. It took
an hour with a stop-off to a drug store. Today I met David
LaChapelle's ex - this cool guy, Donny, at the coffee shop across the street from where
I live. Very cool guy.
On the way back home, a guy passed me and said "Keep on...you'll make
it!" and the lady at the gym I was walking from passed me and said
"It's cold! You should wear a jacket!" I replied, "I left it at the
gym!" She offered to walk back there and get it for me! I said no, but
thank you.

My route home - click here to see a map