Disability Journals – by the real Eric Filipkowski
For those who don’t know my story, I was born in the fall of 1993 at a Pearl Jam concert. My mom refused medical attention as she went into labor because she didn’t want to leave the front row and that’s why I was born with a genetic defect called Marfan Syndrome. I had my first open heart surgery in 1969. I was 9 years old and I can still remember listening to Bryan Adams’ “Summer of 69” on my iPod Click Wheel. I was a loner growing up, a rebel and I was really self- conscious about being ‘different’ in any way. When a kid
produced a medical book in the library with pictures of people who looked like me and asked if I had this condition, I told him to ‘sit on it’ and ran away and hid in the bathroom crying until I graduated high school.
Even the name for it would make my spine tingle; my bowed, calcium-deficient spine. I hear it whispered in my dreams, it taunts me: “Marfan syndrome… Marfan syndrome…”
Anyway, every five or ten years, I would have to have another open heart surgery and they got progressively more complicated with a longer recovery time. It’s like carving up a turkey and then sewing it back together again and then five years later you have to cut it up again and it tastes a little dry and you need to drown it in gravy.
This last one, there was a problem with the heart-lung machine or something and I had a stroke. They said it only happens to a very small percentage of people every year. So that’s where I got the idea for “Who Wants to Marry a Millionaire?” It didn’t leave me completely debilitated and I was able to recover a lot of what I have lost, but I’m not really a ‘glass half-full’ kind of guy, so I just got super depressed and felt sorry for myself, but luckily, that passed. *wink*
Eventually I was able to return to work but my strategy with the stroke, just like my Marfan’s, was to deny anything was wrong. I am now legally blind, so I stumbled through auditions not even knowing where the camera was, let alone being able to read cue cards.Often I would wander into the audition room and only notice I was in the wrong place when everybody else was a six year old girl. I also couldn’t remember my lines as well so I probably burned a few bridges with directors who thought I just didn’t care enough to memorize them. That’s true, but maybe if these had been movies or TV, i would have put in the effort.
I needed help and I was too stubborn and embarrassed to ask for it.
I mean, if I had just told them my problem, they wold have probably given me extra time, moved things closer or just gave me the part outright for fear I would sue them; no big deal. But I was – and still am, to a degree – sensitive about people thinking of me as ‘less than’ or somehow ‘unable.’ This is ridiculous because even before I was disabled, I was very much less than and practically unable to do anything. Just ask all the ghosts of the people I ran over.
But now I am ready to announce I am disabled. It still makes me uncomfortable, but I am hoping I will get used to it. Like when my dad decided to become a nudist.
Which brings me to the subject of this article finally.
Yes, I am disabled. But no, I don’t have a wheelchair. I am not deaf. I am not totally blind. I don’t have MS or CP. If you are like me, this is what you think of as ‘disabled.’ I know, that is terribly ableist of me but I am just trying to be real here so we can get to some understanding, for me as well as you.
I am legally disabled, I could probably get a handicapped sticker, but I constantly grapple with guilt that I am not ‘disabled enough.’
I heard a stat that almost 1/4 of the people in this country have some form of disability and if that’s true, we are horribly under-represented. I just assumed that when people see me, they can’t see my disabilities, just like I may not be able to *see* your disability either. My friend Pickles thought that was pretty funny, but to his point, appearing sickly or like a doofus is not a disability. As the acting work dried up, I switched to writing again, but as you can tell by this article, that’s a dead end. I have faced obstacles there too, because sometimes I physically can’t type or even see what I am writing. I have to use a big external monitor so anybody who would hire me would have to provide one in an office situation or I would sue their asses for every penny they’re worth.
Again, that’s embarrassing and I find it hard to believe they would think it’s worth it to hire me over somebody they just didn’t have to make those provisions for and also is a better writer and more good-looking.
Alright, this is already too long and boring and I really didn’t want to come off as complaining, so if I had to sum up I would say that disabled people come in all different shapes, sizes and disabilities and we all have something special to offer: which is, at the very least, the benefit or our different perspectives.
And that’s why this has been the best summer ever!
Thanks for reading, Eric.