Saturday, April 23, 2011

Social Justice Event: US Pain Foundation

            In the beginning of the year, on January 29th, I attended and worked this event that I found on Craigslist called the INvisible Project. I knew it would relate to our class but wanted to wait to post about it until we were further into the semester. This past weeks reading by Kliewer, "Citizenship in School:Reconceptualizing Down Syndrome" I felt related the most, as well as the video Going to School: Ir a la Escuela. I felt this because this event was all about inclusion for people with cronic pain. Most of these people had severe pain for many reason which often caused physical handicaps, which is a main topic when reading Kliewers work as well as watching the related video in class.
    - this is the link to the main website but their are many links off of this that are also interesting. The event that I worked is under the INvisible Project tab off of this main site.

Founder's Note

Hello! My name is Paul Gileno. I am the founder/president of US Pain Foundation. More importantly I am a person with chronic pain. I have CRPS in my left leg, failed back syndrome in my lower back and a severely damaged left sciatic nerve all of which cause severe pain, spasms, depression, loss of sleep, and a whole host of other problems. It all started on April 30, 2003 and basically it is getting progressively worse. Before my pain journey started, I owned a growing business and the work was very physical. Trained as a chef, I operated a gourmet food store and an off-premise catering business. At the age of 30, I broke the bottom of my spine at work, and since then life has been flipped upside down. I was forced to sell my business, had multiple back surgeries, endured months of physical therapy, and tried every kind of pain management treatment available. Nothing has worked to reduce the pain of the damaged nerve and CRPS. I now walk with a cane, and require a foot brace - without it, I keep tripping over my own foot! So I went from working 6 - 7 days per week, 12 - 15 hours per day, to being unable to get out of bed for several days at a time. I understand what constant pain is like, and what it does to you physically, mentally, and emotionally. I have gone thru so much, including the depression, sadness, anger, self-loathing and everything else that comes along with a pain disease.
 After a few years with chronic pain, I realized this was my new life so I sought out groups for help, sadly I could not find one which met my needs as a person with pain. I searched for educational programs; no luck with that, either. As I continued to search, I realized that the United States really needed an organization, one that can assist people through support groups,  education, information, giving people with pain a voice and by simply showing them they are not alone. I decided the best way to go through my own pain journey was to try and help others cope. And that is how US Pain Foundation was born.  Since we started this web site I have been joined by some wonderful people who help make this Foundation better then I could have imagined. People who help me grow personally - where there was once discouragement and anger, I now see pain as a blessing and I refuse to give up hope that one day I will be cured from pain, but I refuse to let life stop until then, I realize we can have fulfilling lives even with pain. There are many people who help shape the growth of US Pain Foundation - to a national level of healing and hope - because together we can learn to live fulfilling lives, each and every day, despite the pain.
I see the wonderful connections I have now with fellow pain people, and realize we are better off when we are in this together. I realize I am not alone, and I want you to be a part of our community, so you can feel that same sense of belonging. So if you live with pain, or support someone who does, welcome. We hope you'll find the information on this site informative and empowering. And please connect with us at a local US Pain Foundation Support Group, or educational event, an INvisible Event, a US Pain Triumph over Pain Run, Walk or Roll,  at one of the events we sponsor or announce; maybe visit the wonderful online communities we find inspiring. I hope you'll join us today - membership is free - and help make tomorrow a better day for all of us who live with pain.  Remember we are a pain organization created by people with pain for people with pain. I promise if I can do it we all can do it and we are here for you.
     When working this event, Paul was the main person I interacted with. He was such a nice man over the phone and even sweeter in person. I signed up for this because I needed some extra money and heard it involved photography, I had no idea how much it would relate to everything I was about to learn this semester in FNED 346. Paul's story really spoke to me because he is like a gateway between people who were born with pain or disabilities and "normal" people because Paul was once "normal". He lived an ordinary life and experienced something that could happen to anyone. He needed to let down his prejudice (if he had any) and open his world to people who would be considered outcasts. He now had a deeper understanding of what it was like to be so isolated and the effects that has on a person. He has become a great link not only for people who suffer from pain but also to connect people who dont with those who do.
      When I first arrived at Butler Hospital,(where the event took place) I was nervous because I really had no idea what I had signed up for. I had no idea what this event was about besides people with pain and photography. As I began to follow Paul's instructions I set up all of the easels and organized large framed photographs on them. Each easel had three framed pieces on them all about an individuals story; one was a large collage of photos, another was one photo blown up, and the third framed piece was a write up about them. Paul let me know which person out of the photos I was putting up was going to be speaking that day. The speaker was Ellen Smith whom, "was diagnosed with Ehlers-Danlos Syndrome (EDS) in 2004. Since then, she has undergone eighteen surgeries to help her severe case of joint hypermobility, skin extensibility and tissue fragility. As the slightest touch can easily cause her joints to dislodge, she has learned, among many things, to be cautious in public. Taking positive steps to living her best life, Ellen has not let EDS slow her down."
                    The photo on the website is not the photos I hung up during the event. The photo's I saw were much more graphic, she had oxegen tubes on her in many, some were her in bed looking frail and ill and others had her in a wheelchair. Personally I had not been exposed to people who lived with cronic pain so I didn't know what to expect. Looking at her photos I was unsure how to act when she arrived and a bit in disbelief that she could actually be capable of speaking in front of a crowd. Looking at her photos I was very judgemental, not in a mean way but in a way of ignorance. I didn't think this person who appeared to be so handicaped would be able to get up and speak to a crowd and I wondered to myself if her speach would be impaired and if it would actually be interesting. I figured people would just have to be polite and listen or that only the other handicapped people would be interested in hearing her. I know this sounds aweful of me but really I was just uneducated and never exposed to this. This reminded me of a quote I wrote down from the film Going to School: Ir a la Escuela,"inclusion is a better learning experience for all, it gives exposure for all, otherwise there would just be fear of the difference due to lack of knowledge." Unfortunately I do not believe I wrote it as an exact quote and I think it was said by a young boy in the film that was "normal" and had inclusion in his class. I think I thought all of these things about Ellen Smith because I did have fear due to lack of knowledge and exposure.
         When Ellen walked in the building I immediately noticed her dog, a black lab, that was a special trained service dog by NEADS. I did not even recognize Ellen compared to her photos, honestly I saw a healthy, well groomed, smiling woman walking with her dog but not relying on the dog. The dog stayed by her side but was off a leash and didn't seemed to be doing anything but be a dog. I initially assumed this must be someone who worked with Ellen and her dog, not Ellen herself becasue she was too "normal" looking. To my surprise, Ellen was "normal". She was having a good day she said and was ready to speak. She told us about an aweful plane ride and how she almost didn't make it due to the severe amount of pain plane rides can cause her but there she was, normal, peppy and practically running oxegen, cane, wheelchair or anything. This is why I feel they started the INvisible project, because "Pain itself is invisible.  But its affect is enormous.  The Connecticut Pain Foundation has supported a project to make pain more visible."
"Invisible Man" sculpture by Elizabeth Catlett

While thinking of this event and my feelings toward it, I often found myself thinking of Allan Johnson's Privilege, Power, and Difference. I mostly thought of his introduction when he talks about how we are all part of the problem "but we could also make ourselves part of the solution if we only knew how...become part of the solution by getting us unstuck. ... allow us to see not only where the trouble coms from, but how we as individuals are connected to it, which is the only thing that gives us the potential to make a difference." (pg vii) I felt as though Paul Gileno allowed me to see how I could be connected to these people who are suffering from pain. I thought about all of my work experiences as well as activities I enjoy doing, such as horseback riding, and how easy it would be for me to be injured in my everyday life, especially while driving, and how that could turn my privileged, able-bodied life into something totally different. Another Johnson quote that makes me think of how I initally felt at this event is, "But as a sociologist, I also know that it's possible to understand the world and myself in relation to it in ways that get past the defensive feelings and give us all a common ground from which to work for change." I feel that now I am much more educated about how isolation itself can be really painful and just the one day exposure and peek I had into these people's lives allowed me to get past those defensive and fearful feelings I had. Again it took a person like Paul and his story to help me relate and break down my personal prejudices.
               When I think about how stunned I was to see Ellen Smith behave so "normal" I think about a quote from Christopher Kliewer's Schooling Children with Down Syndrome. This quote is stated by Jason Kingsley saying, "Now we know that people with disabilities can learn and have a full, rich life. The challenge is to erase negative attituted about people with developmental disabilities, get rid of stereotypes and break the barriers for people with disabilites." (cover pg.) I agree completely that this is the biggest challenge and I see that my lack of exposure created a negative attitude and stereotype in my head.
        Although I think that what Paul Gileno and the US Pain Foundation has done is amazing I do feel that Kliewer would disagree a bit as well as Jeannie Oakes and some people in the Going to School: Ir a la Escuela film. I understand that the US Pain Foundation has the intention of connecting people with pain and has done such a wonderful job doing so that they have created their own community. This started out just in CT and became so big so fast that they had to rename it the US Pain Foundationg rather than the CT Pain Foundation. There was an enormous need for these people to connect but why I feel that some would disagree is because I feel that by creating this community for the people of pain, by the people with pain has still an isolating quality. Jeannie Oakes talks about tracking in schools and how that creates uneven opportunities and segregation, I think that relates to the US Pain Foundation because they are still isolating themselves by placing them into a tracked category of people with pain. In the film one of the fathers of an autistic boy said his son, "needs to be as socialized and normalized as possible; not be modeling other autistic behavior." So although I find it wonderful that the people with pain are able to come together, I wonder if it would be better if it weren't just people with pain they were associating with. These sufferers find it very helpful to be able to see that they are not alone and others can relate to their pain and isolation and often depression but it that doesn't allow people who are not in cronic pain to be exposed to this and therefore accepting and understanding of people who suffer. In Kliewer, Douglas Biklen says, "society itself is hurt when (schools) act as cultural sorting machines." (pg.73) Although they are speaking about schools, I think that there is still sorting going on by having only people of pain be joined together.  Kliewer also notes that, "Success in life requires an ability to form relationships with others who make up the web of community."(pg 73) I now believe this statement and wonder how to truely create an integrated society so that there are no more prejudices.

Lastly I felt this video was an interesting one to learn from. He talks about people with cronic pain but I think it can relate to anyone who feels isolated because they are "too different" in some way.



  1. great job! sounds like it was an interesting event.

  2. powerful event and so many good connections to our course materials!