An interview with Sarah May Scott
Susannah Breslin is a guestblogger on Boing Boing. She is a freelance journalist who blogs at Reverse Cowgirl and is at work on a novel set in the adult movie industry.
(Self-portrait by Sarah May Scott)
At Mayday Productions, blogger Sarah Scott writes about life with a spinal cord injury. Her writing is searingly honest, brutally revealing, and wickedly self-aware.
The after is where it really gets grand, gets epic, gets to where one memoir could never be enough. Truly epic shit doesn't start to go down until the very moment you decide to start living again, to start crawling your way back into the light and out of the darkness. I know enough to know now I'll never fully leave the darkness completely, but the reprieves at this point seem to be enough to keep me going for now. sometimes. But no one wants to hear about the after, because it doesn't arc as much as it shakes and shudders in fits and spurts until eventually you recognize an ersatz normalcy has filled the void you left somewhere in all the fallout.
I interviewed her for Boing Boing about life in a wheelchair, if she considers herself a cyborg, and her plans on becoming a female Hardiman.
SB: Tell me your story.
SS: The story that everyone wants to know from the start is why I use a wheelchair. I was 29, one minute racing my road bike, and the next "tits up in a ditch" and a paraplegic. That was nearly four years ago. Prior to that, I was your basic hot mess, but that's a longer story than there is room for here. I will say that PTSD has figured in for a longer time than I ever realized until I was injured. For once in my life, and this always sounds crazy, but after everything I've been through I actually like who I am for the first time in my life, chair and all.
I am a small-town girl from State College, PA, though I spent some time in NYC and Philadelphia before returning after my accident. These days I live in a very rural area with my crazy mutts.
SB: Are you a cyborg?
SS: I am not a cyborg, but I am getting closer and closer to being a terminator. My back is already full of titanium, and I've got a radio-controlled device in my abdomen that feeds medication into my spinal canal. If the trials go well, I hope to get my chance at being the female Hardiman with the ReWalk system. You can start calling me Ripley when that happens.
In a sense, being in a chair is like being a cyborg/object to a lot of people, somehow not quite human. I think all women know what it is to feel like an object to a certain degree, but I found it to be much different when you're viewed as a asexual woman and a person of very vague use if any. It made me very early on understand that to survive I was going to have to change how my self-worth was measured.
SB: Why do you blog?
SS: I started blogging for a few reasons. I was desperately lonely and going through all these sort of insane experiences that no one could understand, and I was desperate to be able to explain them in such a way that people would be able to understand without reverting to all the chair stereotypes that I was just a bitter, mean, crazy person now. There were a lot of people in my life that didn't make the transition to be able to see me first and the chair second, and it was heartbreaking. I thought online I could control things in such a way that people would see me again. In the beginning, it was very much about control.
As things have evolved, I started to ease up on that obsessive level of control and start showing the darkness too. It turned out to be hugely therapeutic for me, and I hope that it humanized me for a lot of people as well. More than anything, I want people to see me as a person and not as an object of pity or otherwise. My story is really about grief and catastrophic change, and I think most people at one time or another in their lives can relate to that.
Something that wasn't diagnosed early on was that I had a Traumatic Brain Injury during the accident, and my brain works a lot differently now. I can't remember shit, repeat myself constantly, fuck up words, and these creative floodgates opened up and haven't closed since. I see the world so differently, which I think is a big reason why I became so insanely drawn to photography and writing. I write and take pictures because I have to, it gives meaning to my life even if I forget from time to time that I have any.
SB: What do people not understand?
SS: Most people forget that I'm a very ordinary person living under extraordinary circumstances, and that I'm also incredibly shy to the point of near social phobia in some cases. The things that make healing the most difficult is all the shit I carried with me before the accident, things that become unavoidable after being catastrophically injured. I don't think I'll ever stop grieving, but I do know that everyday it gets a little less painful.
SB: If we could open you up and look inside, what would we find?
SS: Under all the armor, I'm someone who's been trying to survive one way or another my whole life, but never had a map or a guide to know how. My hope is that you'd find a lot of resilience and hopefully some beauty along with it. I like to think that I'm finally becoming on the outside the person who was hiding in there all along, but for many reasons wasn't able to be. I'm really, really hoping there's a photographer in there, but only time will tell.
Sarah's blog, Tumblr, Flickr, Twitter, Etsy, and service dog training blog.
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And once again, BoingBoing contributes relevant quotations for my thesis. Thank you, Susannah.
imho,
to be honest, i think that miss scott is for all practical purposes as normal as anyone born, raised, and dealing with our human predicament and as nomimal as ANYONE else in this chaotic existence. the shackles of civilization and the conditioning of minds are to all humans as equally compelling and valid conditions of constraint and limitation . she opens her eyes sees. we open our eyes and see. this does not change a thing.
I hadn't realized Ms. Scott was doing so many things online. I started reading this article and thought things were sounding familiar and realized when she mentioned that she was a small town girl from PA, that this was indeed the same person I read about not 2 weeks ago:
http://www.cyclingnews.com/news/tour-de-toona-injury-lawsuit-dismissed
It is unfortunate that she suffered this injury. It is unfortunate that she will likely never have the kind of life she once did and that many of us are lucky to have every day. It's sad and disheartening that things like this can happen in the world we live in and we can't fix them.
However, I have little sympathy for someone who takes something that is almost exclusively their own fault and tries to blame other people. If you jump out of an airplane and your 'chute doesn't open and you're unlucky enough to live, it's not the pilot's fault. And in a case like this, if you wreck your bike in a bike race, it's not the race organizer's fault, or the DOT, or the state, or anyone but your own.
I'm glad that the case was dismissed, but the continued pursuit is what bothers me most. I'm in the cycling industry. I'm participating in a 24 hour fundraiser in 2 weeks. If I crash into one of the hundreds of trees along the route and end up paralyzed, I'm not going to be happy, but it's not the fault of the Lance Armstrong Foundation or the guy who puts on the ride. All this sort of pursuit does is make events like this go away. Then those of us who want to take this risk into our own hands, and those of us who enjoy it can't because liability concerns are too expensive.
I already have a hard enough time finding places to ride my mountain bike, the last thing I need is someone to take away my road-cycling events, or worse, turn it into a situation where I need to buy insurance just to ride my bike.
I feel a lot of kinship with people who have a ton of implanted hardware. My back is full of titanium because of major scoliosis, which has in some ways limited me, yet has also made me appreciate just being able to walk around and stand up straight.
I really, truly wish and can't freaking wait until I can get some real cybernetic hardware. Cyborg ladies unite!
Regarding Post #2:
I wonder how you, a cyclist, would feel if you fell of the road into a ditch that was not marked in any way, had been freshly mowed so it appeared on the exact same level as the grass, and you were told this was an assumed risk? An assumed risk is one that is visible, or known, or marked.
If you pull on that parachute and it doesn't open, no one would say it was the pilot's fault. But wouldn't the manufacturer's have some fault here? Yes, because it was an unmarked, unknowable risk. That's exactly what happened to Sarah.
In reply to Post #2:
How would you feel if you, as a cyclist, fell off the road into a ditch was completely unmarked and recently mowed, appearing level with the grass. Yes, Sarah assumed risk when she entered the race; however, it is assumed that the risk is visible, and if dangerous, marked. Race officials knew of the ditch and did nothing.
If your parachute failed to open, it's certainly not the pilot's fault. But how about the manufacturer of the parachute? Especially if the manufacturer knew there were faulty parachutes? It's one thing to take risks that are known and visible; it's another when you can't possibly know a risk exists.
@ #4; So you lay fault on the ditch?
Cycling (not just racing) is inherently dangerous. You don't need a ditch to end up a$$-over-tincups, landing on your head and breaking your neck. Some of the worst injuries I've witnessed while cycling were the result of someone being able to get their cleat out of the pedal in time when they stopped for a red light or stop sign. You fall over and land on your shoulder, you end up with a broken collarbone, a concussion, and whiplash from your head snapping towards the ground from the sudden jolt. Put your arm out to stop your fall and you end up with a compound fracture of the Radius and Ulna or a dislocated shoulder.
I know there's a curb on every road I ride on and so does the city. If I lose control of my bike and hit the curb and end up paralyzed I can't sue the city for not making the curb out of foam rubber.
This is what's wrong with the modern world. Personal responsibility does not exist. If I spill coffee on myself it's McDonald's fault because they didn't tell me it was hot. It's common-freakin'-sense. If you crash your bike, you're going to get hurt, whether it's a little road rash right on up to getting killed.
It's the risk you take.
Ah yes, the good old "frivolous" McDonalds coffee case which, long story short, WASN'T.
@ #2
Where in this article does any of that come up? In post #5 you talk about "what's wrong with the modern world", you got it incorrect... what is wrong is anonymous posters complaining about something unrelated to the article in question.
And of course the fault is not with the ditch, but with the race organizers for failing to correctly mark the course. For someone in the "business" you fail to grasp the "responsibility" of the race organizers to provide an adequately marked course for racing safety.
Or does responsibility only exist with victims in your modern world?
Sarah May Scott has my respect for the way she has and is living her life. She has more guts than most I know, and a real knack for writing that conveys her inner self.
#5 please, please, actually read up on the mcdonald's coffee case before you use it as an example of anything.
"I will say that PTSD has figured in for a longer time than I ever realized until I was injured. "
I'm not sure I understand what she means there. Before or after the accident?
@nexushell - "However, I have little sympathy for" other people
fixed your thing.
Oh geez, number 5, you had me going there until you brought up the McDonald's coffee case. Please try to know what you're talking about.
A person dealing with extreme and sudden disability is the point here, people -- assert your case, if you dare, of fault!
As a disabled person (incidentally, no fault possibly attributable according to current medical research) who remembers being young, much healthier, and somewhat reckless, I implore you to empathise!
Else, how far would you go? I just read her entire blog and she pushes for health and independence but is often (not always) thwarted.
From wheelchair comfort (meaning: function and lack of further injury) to a snowplowed parking space on a hill, all she is really looking for is the facilities to function (almost) as most others do.
-- GimpWii
@ nexusheli (Nos. 2 and 5) - Sarah assumed every foreseeable risk. She did not assume unforeseeable ones, including reckless conduct on the part of others, which according to the article which you link, is what she is basing her claim on. She’s got a right to seek redress if she was wronged by someone else’s egregious fuckup --and you should thank her, because it’s the efforts of people like her who provide an incentive for other people --cycle race organizers and pharmaceutical companies, megacorporations and taxi drivers --not to be negligent, reckless, fuckups.
And as many others have pointed out, please do look up the McDonald's case. BB readers should be too smart to uncritically fall for that kind of right-wing PR.
I understand I've taken an unpopular stance, I knew that as I was typing it. But just because it's popular to feel bad for someone doesn't mean you should.
@ #6: Nowhere, but we're lionizing someone and in the interest of disclosure I felt it needed to be known. My name's Nick if that's a concern to you. Does it matter? I don't think it does. If the course wasn't properly marked, then the organizers were at fault, but that's not the case as is evidenced by the case being thrown out.
I mention being in the industry because it affects my job almost directly. I sell highly specialized racing bikes (and no, I don't work in a bike shop). I volunteer with the local grass-roots organizer who puts on almost every mountain bike race in my county and a large percentage of the races that happen in this state as well as a large number of road cycling events. His job is hard and I'm amazed at the effort he puts into it almost every day. As you can imagine, marking every tree out on the MTB course is nearly impossible and simply not practical. He can't fill 12-miles worth of ditches with hay bales nor mark them all. He also can't put up guard-rails on ledges that will almost certainly end up killing someone should they fall. And God-forbid that day comes, when that idiot's family sues, it will ruin my friend and destroy the only source of cycling events in this city I'm in. It will likely also force the closure of whatever publicly owned trails it occurs on, which means I won't be able to ride my bike.
While that sounds incredibly selfish, there are a few thousand other people in this city that wouldn't want that to happen either. At the same time, trying to lay blame on the organizer to collect money, let alone the state is about as selfish as it comes in my eyes.
@ #8: Yes, McD's kept their coffee hotter than other establishments. Yes, they knew other people had been burned. No, they didn't care. That doesn't make it their fault that she spilled the coffee. We're not talking details here, we're talking the crux of the matter, and that is personal responsibility. I was taught at about the age of 3 that coffee is hot and you probably shouldn't touch it or spill it on yourself. 27 years later I've been fortunate enough to avoid it. Pizza cheese on the other hand, that stuff's like napalm...
@ #9: If I had no sympathy for other people as you believe, why would I bother spending 12 to 16 hours straight, on a bicycle raising money for cancer research, not having had cancer myself? I like riding my bike, but not that much.
nexusheli #15:
...Yes, McD's kept their coffee hotter than other establishments. Yes, they knew other people had been burned. No, they didn't care. That doesn't make it their fault that she spilled the coffee. We're not talking details here, we're talking the crux of the matter, and that is personal responsibility.
McDonald's was warned to keep their coffee at a temperature that complied with safety regulations, and they didn't. How is that NOT a matter of personal responsibility for McDonald's?
They didn't pay out that relatively small amount of punitive damages because their coffee was spillable, they paid because it was scalding.
Sorry to be so off topic of the above debate, but it's just so damn great to have Suzannah back as a guest boinger. (been in the woods for a week, so I don't know if it's the beginning or the end of your stay, but glad to see you stuff here again!)
Re: Nexusheli
Couple thoughts -
1. Our medical coverage system makes it inevitable that she has to sue. Basically, she's totally fucked even if she is covered by her own health insurance. I suspect that her insurance even did require her to sue.
2. Regarding the McD coffee case:
I know and you know that coffee is supposed to be hot. And spilling hot things definitely is uncomfortable. But you shouldn't end up with severe burning from a cup of coffee. I spill coffee on occasion and have zero scars from it. Considering that the restaurant had already been told they were burning people and had been told to lower the temperature and had come to the decision that it was cheaper to burn people than to not be able to say "we have the hottest coffee in town," I think there's a reasonable case to be made that there was actual deliberate negligence involved.
I used to think the same thing as you about the case until someone filled me in on the details. It's the details that make the difference, no? As I recall the award was calculated as the amount of money that McD makes from coffee in one day.
Actually, read http://en.wikipedia.org/wiki/Liebeck_v._McDonald%27s_Restaurants and then tell me that you still think it was a ridiculous suit.
why would I bother spending 12 to 16 hours straight, on a bicycle raising money for cancer research, not having had cancer myself?
That's between you and the cold, cold night.
What kind of cred does your (admirable) efforts build up for you that isn't destroyed by an ill-informed comment about another litigious cripple? (since you're putting words in my mouth, I'll return the favor)
Why would you bother to toot your own horn and expect anyone here to react better than you did to the post, THAT is my question.
to refocus the comments on Sarah...
I find her a heart-warming inspiration; it is particularly relevant that Sarah has found herself to be happier with herself than she was before the accident that changed her life. All of us should learn from this to take a careful look at ourselves and learn to appreciate the presence in which we exist.
Thank you, Sarah, for bringing this to our attention! I have added your blog to my favorites and am inspired by your photography as well; a great and fresh perspective!
@#21: Thanks, FPHJANSEN, for refocusing the conversation on where it should be: Sarah's amazing story.
I became aware of Sarah's blog through a Tweet I read of Susannah. I find her voice to be very real, honest and remarkable. As someone with a disability, you just don't come across writers like her, that convey "the life" in such a clear way. I find reading her words to be helpful to me and I've been dealing with it for 53 years. Thank you Susannah and Sarah.
I feel compelled to respond to the thread about Sarah's lawsuit because the disabled and injured are often portrayed as lawsuit happy and bitter. In real life, that is just not the case. And Sarah's writing shows that.
If the same thing had happened to Nick, I bet he'd be wondering if there was something that could have been done to prevent his life being changed forever. Did someone cut a corner on safety?
His argument about having to put protective foam rubber on every tree, this kind of exaggeration, really diminishes the seriousness of what happened. No one is that ridiculous to suggest that.
For me it's not about feeling bad about what happened to Sarah and being sympathetic. For me, it's about not taking an attitude that infers that she is a cripple with nothing better to do than to file frivolous lawsuits.
You cannot measure the cost of this kind of injury.
The quality of care for the newly disabled varies wildly depending on where you live. I believe that rural communities don't have nearly the necessary support and knowledge that is available to those living in and near large cities like San Francisco. The financial costs of acquiring a disability are as huge as the emotional costs.
So, if someone didn't do their job right on that course, then damn them and don't cry about not being able to have your bike race. If the safety of the riders was paramount in the organizer's and their staff's mind, then it's a tough break for Sarah. Don't belittle her as being lawsuit happy.
Jim
When I was in college, my best friend was Joe Sims, a quad. I also had a friend, Norma, a lady with profound cerebral palsy, who you could barely understand when she spoke. They got around Berkeley in motorized wheelchairs. Joe taught English in High School, and Norma was working on a degree in Rhetoric. They have both passed away and I miss them dearly. Really, really great people. I was a morning attendant for Joe sometimes, and it was a great bonding experience I could never have with a normally-abled person. Joe was best man at my wedding.
There's a mental barrier that keeps some walking people from appreciating differently-abled people. They don't what to say and feel sorry for differently-abled people and say stupid and awkward things. And differently-abled people often expect to be rejected or patronized or felt-sorry-for, so they sometimes don't seek friendships except with others who share their experience, because those people understand.
I never worried about trying to "understand" my differently-abled friends. I couldn't understand in that way. My life does not have that kind of trauma. But I wanted to have them as friends and be considerate of their needs, like I would anyone else. My circle of friends made an effort to include Joe and Norma in outings and let them each just be themselves, and one of the group. It was a privilege and a pleasure to have their company.
I think the worst disability is the inability to relate to people who are very different from you. Physical disabilities can make a person feel like they're worth less than others, and often reduce them to poverty, and limit their lifestyle and travel possibilities. There are terrible burdens to bear: the pain, the boredom, the feeling left out, and the relentless dependency upon other people as assistants who are often not very patient or motivated. People who manage all that and maintain their dignity and sense of humor, and can be "like folks" are to me very heroic, inspiring and admirable, and life would be poorer without them.
inspirational.
Also, it has to be said, Ms Scott has a lovely back.
scar included.
Good fortune to you Ms Scott, and all you do.
Another OT post, but am I the only one who noticed that Sarah is gorgeous?
Imagine for a moment that this had happened to you. Would you not do everything in your power to obtain the financial assets necessary to sustain your life and health?
I can honestly feel how alone you must feel. I too survived an accident that has left my sternum damaged, my discs bulging, but somehow through it all I never became paralyzed. I remember the EMTs pulling me from my car and proclaiming, "you're alive!" They apparently did not think there would be a living breathing person in there. I have been told that I will need a rod in my thoracic spine at some point in my life, just not now. So I live my life as a 32 year old male in daily pain, for 9 years now I have survived. I truly feel for your story and wish there was more the world could be for people that are injured. Maybe stem cells will help rebuild your nerves that are damaged, one can only hope. Hope is what you have on your side, remember how much you loved life before this, and keep that reminder in your pocket.
It is what keeps me going every day, every day.
Sara you are a true hero in my eyes for attempting treatments that allow the medical people to learn how to treat injuries like this.
When you watch the Paralympics (do you even watch the Paralympics?), do you see "inspirational stories" or athletes? I think that's what Sarah meant by people seeing the chair first and her second. Thankfully, Universal Sports' coverage of the Beijing Paralympics was almost completely devoid of the stupid "isn't it wonderful what they can do with their handicap" stories and focused on what the Paralympic Games are -- games. I'm an able bodied person who watched the Paralympics and learned the following: (1) Wheelchair basketball is one of the most fun sports to watch in the world, and I really don't see any difference in the use of the chair or the use of skates in ice hockey, it's just sports equimpent (2) wheelchair rugby bores me as much as "regular" rugby does, but it looks like a lot of fun to play (3) I can't really see much difference between between Olympic and Paralympic swimmers when they're in the water (4) Paralympics may actually have a higher percentage of pretty female athletes than the Olympics do (I think that means that I'm seeing the person first and the disability second...).
Just about everybody in the world can do stuff that others can't do. Just because I can walk doesn't mean I can play a guitar. Being able to see doesn't mean I can understand. And, as my wife would surely attest, being able to talk doesn't mean I can think. But I do suspect that Dilbert's Law (from the comic strip) applies to disabled people and able bodied people equally: "No matter how brilliant you are, you spend 95% of your time doing things at which you're a complete idiot". Remember that the next time you see a chair, then look the PERSON in the eye and remember that you're both screwed up in your own ways -- and that person in the chair can most likely kick you butt in something.
After reading the wikipedia link, I can conclude it was definitely a ridiculous lawsuit. I wasn't sure before, but now I am.
God save us from making decisions based on Wikipedia articles.
#28, your comments of solidarity and support are lovely to see. However, in the long run, I think that many disabled people would rather not have people feel sorry for them, but rather they be ambivalent.
I look forward to the day that I can blend into the crowd because my appearance doesn't stir up fear, pity, confusion or jaw dropping staring.
Everyone has a freaking opinion, but if you weren't there and your job isn't interpreting and ruling on laws and prior precedents, stuff it. It's her right to have a dispute resolved in court by a judge, regardless of the internet knowitall riff raff out there. Deb, Iowa City