Being a fan is one thing but being a disabled fan is a whole different ballgame with unexpected challenges and adventures. Most people don’t understand what it means. Strangely enough people are often under the impression that it opens more doors as it shuts. That it's a perk being in a wheelchair because you get to go up front. I hope my story explains why it's actually harder and every perk means I'm lucky for as change. One of my challenges is not being as aggressive as some people would like me to be when it comes to standing up for myself. Well this is me standing up to Gerard Butler and his fandom.
My story starts with a real whopper. I got caught in governmental bureaucracy which forced me to crawl through my house for 5 years. Due to my disability I received home aid but no wheelchair. Every night I had to crawl up the stairs to my bed which caused me great distress and awful pain. My way of psyching myself up for it was watching my favorite tv drama Sharpe. I’ve lost quite a few home aid ladies who couldn’t stand to see me in this situation and had meltdowns on my couch. I couldn’t afford to have a mental breakdown because I was battling in endless court cases which took me years. If people asked me what it does to you I would say in the Netherlands you get 6 years for murder and you don’t get to spend that in solitary confinement. This experience literally beat the crap out of me. Sadly it’s not unique because there are stories of torment, abuse, sexual assaults up to horrendous suffering of disabled people all over this world. It’s not limited to far away countries who stigmatize disability as witchery or a bad omen. It’s just hidden to the public in “civilized” countries. I have a problem naming it civilized because the stories that I’ve been told by fellow wheelies make the worst horror movies look like a joke.
It was a matter of survival. When I finally received my wheelchairs, which took another year, I had to find a way to heal myself. Apart from my loving family there’s no help because the system doesn’t understand nor wants to understand human feelings and emotions. It only deals with paperwork and not the effects. Already during this nightmare I fell back to my basics. I've been a movie fan since I was a little girl. I loved watching the old classics with Sidney Poitier, David Niven, Gregory Peck, John Wayne etc. The Fellowship of the Ring was my first trip out of the house and it wasn’t easy. I loved it so much that I went again ALONE. What was I thinking? Without a chaperon people respond very differently. It became deathly silent when I entered the hall after the movie. Luckily the lady bartender started to chat with me as she had done before. After a sigh of relief other people joined the conversation about the movie.
It’s reoccurring human behavior I see a lot. People automatically thinking you’re retarded because you’re in a wheelchair and being afraid to talk to me. People say the weirdest things. There's a specific condescending comment that I hate most .... telling me I misunderstood, automatically assuming my brain doesn’t work. HELLOOOOOOO I almost have a master’s degree in computer science and I did that all studying alone at home. I rarely saw a teacher. “You’ve already passed the exam? How come I’ve never seen you before”. I rarely needed a teacher other than to pass a mandatory project, after already passing the exam. I equally confused the teachers. They are used to students who need to be motivated. I'm however blessed with plenty of motivation, on several levels.
I was lucky that the first Lord of the Rings forum I stumbled upon had wonderful intelligent people with an enormous amount of humor and respect for others. I later found out there are “kiss their ass” forums which consist of putting a "star" on a pedestal, calling them God. Forcing every fan to think, feel, speak and behave a certain way. One fan eloquently called them fans who think the actor shits roses. They see themselves as the good fans. To me they have typical gang/sect characteristics. I’ve never been drawn to black/white cubicle minded people. There’s a lot of different colors of grey in this world and being disabled I’m one of those people who doesn’t fit the standard cubicles but am constantly somewhere in limbo.
I had little to do with the "good" fans other than going there for a look when they did their usual attacks on our (and other) forums for being bad fans. Good fans are always determined and surprisingly convinced they can make other people do as they are told. I was late coming to the forum so the politics behind the screens at first escaped me. They thought I was a spy for the other side. Spy, who me, what? "I think you're just a bald guy with a big belly from Jersey". They slowly trusted me and I learned the ins and outs of forums. Politics became a real problem when I went to my first actor meeting. More about that later. It was a nightmare getting that trip together. I could not get in contact with the event venue, a museum, to ask if it was wheelchair accessible. They didn’t respond, their server crashed for weeks from the huge response …… a nightmare without end. I had to know about accessibility and the address of the venue to be able to plan a trip to Denmark and book a hotel nearby. I had to be able to lie down as soon as possible if I would get a pain attack. The forum helped me to get in touch with Viggo Mortensen’s assistant who passed me on to the right person at the museum. I named her museum Susanne as she had the same name as me, which confused everybody.
When I met museum Susanne she said “Thank God you are really disabled”. HUH? Later she explained how fans would write the strangest emails, which made her wonder if I was really disabled. One woman said she was an opera singer. She needed special assistance to get to Viggo because she had to perform that night. One email was weirder as the other. It's these kinds of fans who make organizers suspicious whether I really need assistance. She was very relieved that I was really disabled and she could help me. Sadly I could only go to the museum and not to the event for fans. It had no wheelchair access and lots of stairs. Museum Susanne apologized for not thinking of disabled fans when she had booked that venue. Things changed when Viggo Mortensen himself ordered that I should be at the other event too. I later found out that “good fans” had gotten free tickets to both events from his highly political game loving assistant, despite the rule of only 1 event per fan. This woman was deeply involved in controlling, monitoring various forums, including posting and gathering fan's private information behind the screens. Because of her I learned a few things about how fans are handled. She profusely protested about me going to his poetry reading but Viggo would have none of it.
A day later museum Susanne phoned me officially inviting me to be a personal guest of the museum. Getting inside was a nightmare. It took 3 strong men. I was dangling around the shoulders of 2 while a 3rd carried my wheelchair. Up the stairs, down more stairs, take a breath in the bar section, up more stairs, down more stairs, even more stairs, yeez that’s a looooong way down. At that point my brother said thank you, put me back in my wheelchair and carefully bumped me down the last long stairs. I was already exhausted from just getting inside. We were seated up front next to Viggo’s son. Another museum employee introduced herself and said ”you’re so lucky to be disabled”. WHAT? My brother calmed me down as that woman was already having a nervous breakdown from the stress and had no clue what she just said. The strong men quickly got tired of me and wanted me out. Luckily the organizers stopped that and I was allowed to stay until the end of the evening. I was embarrassed on behalf of the “good fans” who howled as if they were at a strip show instead of a poetry reading.
This first trip was not only special for it being my first meeting with a star but also due to the events that would follow. We hadn’t seen museum Susanne again because she apparently rushed off on her holiday. Not much longer I was contacted by Tina. Museum Susanne was diagnosed with cancer and dying. Our instant connection had been noticed by everybody at the museum and they wanted to make me a part of her last months. Emails went back and forth. They read my emails to her at the hospital. The morning of the funeral I got an email before they were leaving and an email afterwards, describing in great detail how the funeral was. It was very sad because she had very small children but the love and respect towards me was heartwarming and it has been a warm yet emotional memory to me. Sometimes people with great lives are taken way too early, while others who suffer and yearn to be released have to endure more suffering.
Tina left, Susanne right
I started going to conventions which threw new obstacles in front of me. Did you ever SIT in a crowded room with everybody standing, waiting for your turn? No, well you sit with your nose at butt height. Crowds create a lot of heat and everybody is sucking up the fresh oxygen waaaay above your head. The result is me getting dizzy and heading towards the floor. Did I mention some people should stop eating beans? Lucky for me Lord of the Rings fans saw their disabled fans struggling and every year they set up a special help desk for us. They would all offer up their time to help us. There was never any stress and everybody helped each other out. That’s when I learned it’s not just fun meeting a star but I loved seeing the looks on other faces as they met a star for the first time. That's when I started to notice how some stars enjoy that too.
A few stand out for me. Shane Rangi held my hand for a long time. When he had everybody’s attention he kissed it. Hundreds of people laughed. Me of course totally embarrassed. When I met Lawrence Makoare (Lurtz, Gothmog and the Witch King) all eyes were on us. He had contacted me himself by email telling me he would be happy to see me. The greeting was so warm when we met that it had many people literally shedding a tear. This huge guy managed to give me a full body hug while I’m sitting. It must have looked utterly ridiculous how he threw himself on me with his legs wide to avoid my leg supports. Several of them, such as Viggo, went on their knees for me too.
Lurtz guarding my wheelchair
Another star asked me politely if he could ask why I’m disabled. When I replied yes, I learned his wife had a similar disease and only a short time to live. In seconds we were discussing life and death. The tricks we use to try and lengthen our lives, while making it more pleasant and less painful. When you’re forced to face death, quality of life quickly becomes a goal above everything else. Andy Serkis (Gollum) is still the best memory. I can’t explain it. You have to look at it yourself. It suffices to say that his antics had me waking myself up several times during the night because I was laughing so hard in my sleep.
The connections I’ve made with these people, however short, have greatly added to my life, my joy and my memories. It’s the good memories that help me through pain attacks but even museum Susanne has a special place in my heart. There are levels of pain that can't be fixed with painkillers. The treatment consists of knocking me out. I learned to embrace pain and give it a place in my life because it will never go away. I prefer that over turning myself into a zombie so out of it that I don’t notice the pain so much.