Pro-neurodiversity, pro-vaccines, pro-disability rights, anti-cure.

Now Katy doesn't want to live in Smithton anymore.

Saturday, November 12, 2011

November Updates

It's been an interesting month, and it's been a while since I updated.  But I'm up late, can't sleep, and my back pain is particularly brutal at the moment, so I figured I'd take the time to let everyone know what's going on.

Autistics Speaking Day was November 1st.  It was our second annual ASDay, and more successful than the last.  The permanent ASDay page got more likes, and although we had fewer people who clicked "attending" on the event page this year, we had a significant increase in the number of people who created videos, blog posts, pictures, poems, and other works for ASDay.  Last year we had 80; this year we had over 100.  Corina and I are very pleased with the results.  I wish I'd had more time to devote to promoting it, but as I'll explain in more depth later I've been ridiculously busy this year and I let it go more than I should have.  We have links to all of the posts on our blog, including an article in the Guardian.  I even made my brother jealous when I found out Stephen Fry tweeted about ASDay, which led to several more people becoming interested in it and me basically freezing for several minutes going, "Stephen Fry knows who I am.  Stephen Fry knows who I am," and talking about it to anyone who would listen. 

All in all, was a good day, but after it was over I had a drink to calm my nerves and slept for 14 hours.  I'm sure I mentioned this before, but it's extremely stressful running an event like ASDay, and the "YES, I DID SOMETHING AWESOME" feeling comes along with feeling overwhelmed and overworked.  I think it will be easier for me next year when I'm out of school.  I'm really glad I had the opportunity to work with Corina and with all of the people who participated in ASDay.  I know it meant a lot to a lot of people, and I think we all deserve a huge round of applause for our work.  It will never cease to amaze me what happened last year, and now that I'm here looking back at Kathryn Bjornstad in 2010 I see that ASDay changed my life for the better.  It was the first time I really participated in the autistic community, and it was a launching point for me to begin working with ASAN on their communication team, which has put me more in touch with the needs of our community.  I feel like I'm making a difference in the world, and I'm doing things I never thought were possible before.  I went from seeing myself as an unemployed student with an inferiority complex to seeing myself as an activist.  I'm not famous, I'm not all that impressive, I'm not charismatic or anything like that, but I'm still capable of having some kind of an effect on the world.

Corina and I have seen our work pay off.  Most of you have probably already heard, but ASAN is having an anniversary fundraiser later this week.  When I heard about it I wanted to go but did not think I would be able to.  Then I found out that Corina and I were receiving an award for our work on ASDay and I would get to go to the fundraiser in Washington, D.C. to receive it.  I am both shocked and extremely excited about this, and I'm grateful to Ari and the others at ASAN for giving me this opportunity.  This will be my first time meeting Corina, who changed my life when she first typed out the phrase "Autistics Speaking Day."  We work really well together and I consider her a friend, but I've never spoken to her before.  I've never met any of my other advocate friends in person before, and I'll be meeting a lot of them this week, including Ari Ne'eman, Melody Latimer, Lydia Brown, Emily Titon, Savannah Logsdon-Breakstone, and possibly others I haven't heard from yet.  (Please let me know in the comments if you'll be in D.C. for the fundraiser--I'd love to meet you.)

Trying to attend the fundraiser has created even more work for me, including something you all will hopefully see at the event itself.  It's been hard trying to plan the trip while I'm so busy myself.  We had to arrange our flights and find a hotel room for both myself and Sean, who I would not be able to travel without since I will melt into a ball of oversensitive mush as soon as the plane's engines start making noise, and I rely on Sean's help a lot, especially in stressful situations.  I also had to find clothes suitable for a formal event when I realized the dress I had planned to wear doesn't fit. 

It's just been a stressful semester in general for me.  I'm taking 16 credit hours at the moment, when I've only been able to survive taking 12 at a time before.  At the end of this semester I will be done with school and I'll get the degree I was going through all this pressure for.  I'm writing my senior thesis on the history of the autism rights and neurodiversity movements while trying to keep up with work and the rest of my course work.  I don't have much time to myself anymore.  I normally need to relax for as much time as I spend working in order to retain my sanity, and it has been sadly impossible to do that between everything that's been going on.  I've been experiencing more meltdowns and more panic attacks and started taking medication for my anxiety. The stress is causing my muscles to tense, and tense muscles make my back more likely to hurt, and the pain creates an even lower tolerance for stress.  I turned 23 a few days ago, and my only wish for my birthday was that I could spend the whole evening letting my back unclench and watching Sean play Fallout: New Vegas.  I'm thinking about my upcoming wedding that's only three months away.  I'm thinking about the student loans I'll have to start paying off and the terrifying amount of money I spent on my education.  I'm thinking about the fact that my house is in desperate need of a cleaning and that it's been a while since my last cortisone injection and I can feel it.  I have two papers due while I'm in Washington D.C., one of which is 30 pages and I haven't had time to start on either.

I'm really lucky to be working with people as understanding as the folks at ASAN, who are working with me to make my work load easier.  A great deal of my stress is my own fault for not letting them know earlier that I was struggling.  I hope once I'm less stressed out that I'll be of more use to them.

I hope I don't sound too depressed or negative.  I know everything is going to turn out okay.  The thing I want everyone to understand is that my life is a heterogeneous mix of happiness and stress right now.  I'm extremely happy with the way my life is going.  A year ago I had no idea what my future was going to look like, but now a huge part of the image is clear and the future is very nearly my present.  In a few months I will be a college graduate, be married, my resume will have an impressive-looking award and an actual degree to make it prettier, and hopefully I'll be increasing my work at ASAN.  But what that means is that my life is changing extremely rapidly, and sometimes that makes things look a little ugly.  I see the light at the end of the tunnel, but what I need right now is more sleep, a good massage, and a soak in a hot tub.  Well, at the very least I can work on the first one as soon as I post this, and I'll wait until the others become possible.  I'm looking forward to the event in D.C. and hopefully it will be a nice little vacation for me.  Wish me luck!

Thursday, August 25, 2011

A short and belated coming out post

I don't think I ever mentioned this before, but I'm bisexual.  This may seem kind of random, because, well, it is, but I've kind of been keeping quieter about it than I used to and I don't really know why.  Most of my close family and friends already know, but I've hesitated to discuss it here because I'm afraid to experience the minor backlash some other queer autistic writers have received.  Since I'm in a monogamous relationship with a man, I felt kind of comfortable letting people assume I was straight, and I honestly feel really awkward not mentioning it. 

Just to clarify, I realized I was attracted to girls when I was about 12.  I was kind of upset about it at first, because I knew gay people but I didn't really want to be a lesbian.  Just as I was coming to terms with it and ready to mention it to my mother, I realized I was attracted to boys.  I wound up having to tell my mother I thought I was gay but couldn't decide if I was gay or straight because I thought I liked both girls and boys.  I had never heard the term bisexual before, and it took a couple years before I felt comfortable applying it to myself.  In an extremely homophobic school system I tried to keep my orientation quiet until high school, where people just sort of found out but didn't care a whole lot.  My parents, brother, some other relatives, and my friends were all aware, but after college I decided I wasn't going to keep it hidden anymore.  I only mentioned it when it came up in conversation to avoid seeming annoying.  I've never dated a girl before, mostly because I'm so damn awkward, and I've only dated three boys, including my current fiance.  I haven't decided to be straight by dating him, as if a person could decide that, but people have asked.  I don't know where all these stereotypes about bisexuals even come from.  I'm also not secretly a lesbian.  I feel like the stereotypes about bisexuals (the "bisexual" homosexual, the promiscuous person who sleeps with everyone in sight, the girl-who-makes-out-with-chicks-for-attention, the person who needs to just choose, the person who changes their sexual orientation every day, the confused person who thinks bi is cool) are worse than the ones about lesbians.  At least most people agree that lesbians are real.

I've encountered some criticism from certain parts of the gay and lesbian community itself for not being gay enough, or for supposedly being afraid to accept my true identity as a gay person.  I sometimes feel as if I don't belong unless I'm single or dating a girl.  Bisexual erasure is a very real thing.  For that matter, so is trans and asexual erasure, and erasure of other non-conforming gender identities and sexual orientations.  This is why I don't really do the whole gay pride thing.  The ostracism from the GLBT community was more hurtful than what I received from the straight community.

I've mentioned my sexual orientation to a few other bloggers, but I avoided mentioning it here, and only certain people can see the parts of my Facebook page that would indicate I was bi.  I also wasn't sure how my fiance's family would react to it, but eh, if they find out, they'll find out.  If anyone stops reading my blog because of this, I probably wouldn't want them reading my blog anyway.  So I'm coming out of the closet for good instead of standing awkwardly with one foot in and one foot out.  Closets are for clothes, not people.

Saturday, August 20, 2011

New Blog for Autistics Speaking Day

Don't worry; I'm not abandoning this one!  I wanted to create a blog where Corina and I (maybe along with some other people) could update people on Autistics Speaking Day.  Also, Autistics Speaking Day 2011 now has a Facebook event page.  I hope we will have another success.

Thursday, August 18, 2011

On Making a Meaningful Connection Through Writing

I seem to have attracted some attention lately and I've decided that I should write a blog post about it.  Some of you who are Facebook friends with me may know that I am, in addition to being a neurodiversity advocate, a strong supporter of vaccination and a regular poster on the Jenny McCarthy Body Count's Facebook page.  For those who don't know, the Jenny McCarthy Body Count is a pro-vaccination website run by my awesome friend Derek Bartholomaus.  Derek takes time out of his busy schedule to count all the people who have become ill or who have died from vaccine preventable illnesses since Jenny McCarthy started her anti-vaccine crusade.  There is a fairly active community of regular posters on the Facebook page for JMBC, and Derek and his other fans have been very kind and welcoming towards me.  Occasionally antivaxers will troll the JMBC fan page, but unless they are spamming or being abusive Derek does not ban them from conversations.

I enjoy arguing with antivaxers on this page.  I don't know why, except that it helps me blow off steam.  I feel that antivaxers have done a lot of damage to the image of autistic people and that they have made the world a worse place to live in, especially for autistic people like me.  Every so often one of my posts will get lots of "likes."  When I write something that a lot of people like I usually get between one and three private messages or friend requests.  I'm not sure if I'm as impressive as some of these people think I am, but the amount of praise I get from Derek's supporters has made me feel very comfortable in the pro-vax community.  And I try to be humble, so I almost feel like I'm being too self-congratulatory admitting this, makes me feel really good when people tell me how awesome I am.  Like, I sit in front of my computer blushing and I have to hold myself back from repeating all the messages I get to my friends, because I know it's really annoying when people are all, "Look how awesome I am!!!"

But I'm not writing this to say how awesome I am.  I think I'm a good person.  I think I'm a decent writer and that I'm interesting, but I don't think I'm that incredible.  I like attention, but that's not really why I write.  It really honestly touches me to hear that some of the things I write resonate with people, that so many people identify with my words, and it's usually not when I'm trying to show off.  It happens naturally in an unplanned way, and it's a very powerful and special feeling that I get when I realize that I have made that connection with someone.  It's not like pride or happiness or anything like that...I just feel grateful that I am able to make this connection, and I'm in awe of the way words have a power to make people feel this way.  It's not about my ability to write or their ability to write.  It's about this nearly inexplicable feeling that comes with making a meaningful connection with someone in a completely pure and honest way.  It's a feeling that is nearly metaphysical, one that's beautiful, and I want to share it.

That happened again today, on a much larger scale than normal.  Last night I looked at the Jenny McCarthy Body Count on Facebook to see if there were any new responses on a post there I had commented on a few days before.  And lo and behold, there was an antivaxer accusing me of believing only what my doctor told me, of not doing any research on my own.  She told me she knew of three people whose children had instantly changed from the MMR vaccine, that she knew a woman who got diabetes from a vaccine.  And I responded, explaining how I came to believe in the effectiveness of vaccines, why I do not trust antivaxers, and why making a tragedy out of autism is harmful to autistic people. 

And then something happened.  I got more likes on the comment than I usually do.  Then I was got several friend requests and several messages from people who identified with the comment.  Derek shared it on a note on JMBC's page and said that it was one of the best comments he had ever seen on the page.  (I am flattered and appreciate his compliment, although I think there have been many comments that were better than mine.)  A woman I met online through JMBC named Martine O'Callaghan wrote a blog post about how my comment had affected her.  I was pleased that she thought what I wrote was interesting enough to merit a blog post, but when I read her post I could barely believe that she had chosen the post as the first blog post she had ever written.  I have never felt quite as humbled and grateful for the reception I have received from this community, and for their support for my beliefs and the stories they have shared with me.  I am grateful that I was able to have this experience, and I hope I will have the chance again. 

The comment I wrote, as I wrote it, with spelling/typing errors and all:

Kathryn Bjørnstad: ‎@JustinValerie, there has never been a case of autism related to vaccines. Ever. The three people you say had their babies get autism from vaccines have no scientific proof the babies’ autism was caused by vaccines. If they did actually change within a few days or weeks, you’d expect a doctor to note that in charts and you’d expect them to prove their cases. Historically when something is discovered to be harmful and cause things like diabetes or cancer or developmental disabilities, you see the substances are banned or restricted (like DDT and Agent Orange), come with strong warnings on the labels (like alcohol and cigarettes), or have a doctor-backed campaign begging people not to use them (like fattening food). You don’t see a whole lot of doctors and scientists begging people to smoke and eat food that’s bad for them, because they don’t want to advise people to be unhealthy.

I assure you, as an autistic person I am extremely invested in researching the antivax community. I’ve studied a whole hell of a lot of evidence that didn’t come from my doctor. I have read the Lancet paper written by the former Dr. Wakefield who abused children with the same disorder I have. I’ve followed his case. I’ve followed information about all of the major figures in the antivax movement. I’ve read what they wrote. They have never been able to convince me to believe in a global conspiracy where evil doctors give people unnecessary shots knowing that it’s making people ill. They’ve never been able to convince me that the shots are unnecessary, or that they make more than a tiny fraction of people ill.

I’ve read stories about severe vaccine reactions and I know a couple people who have had reactions to vaccines. I know people who have become seriously ill from vaccine-preventable illnesses. I have seen what these diseases do to a healthy baby, and believe me, you are not more likely to get measles from a vaccine than in the community if you live in Africa, where children die every day from the measles. When I look at things written by antivaxers I see they have absolutely no proof, only a lot of conspiracy theories and speculation. Many of these people are so ignorant about science that they don’t understand how vaccines work or how the progression of science and cancer occur. Saying your friend got diabetes from a vaccine because she happened to get vaccinated some time before her diagnosis is like saying her hair turned gray because she stubbed her toe that morning. One thing has nothing to do with the other, and it sounds extraordinarily silly to suggest otherwise.

As for autism, it is typically noticed at an age where most children are developing social skills. This happens between the ages of one year and two years, so doesn’t it make sense that it happens then? It even happens in children who aren’t vaccinated. And it’s not so much a matter of it being triggered so much as it just becomes noticeable that something is “wrong” about that time. Autistic people are also known to spontaneously lose skills. I know an autistic woman who didn’t speak until she was a teenager, spoke for about two years, and then lost her speech again. She blogs and communicates by text-to-speech programs. I personally experienced a change in my abilities when I started puberty. It’s frankly not that unusual for an autistic person to suddenly fall behind, but it doesn’t mean they’re just becoming autistic.

Meanwhile, Jenny McCarthy uses my condition to frighten people out of their health and into buying her craptastic books. The antivaxers, in addition to being wrong and in addition to causing a resurgence of vaccine preventable illnesses in the US, have also made the world a worse place to be autistic. They have convinced people that being autistic is worse than being dead, that autism is the biggest tragedy in the world, that autism tears apart marriages (despite evidence to the contrary) and that autistic people are mere shells of human beings. I’m sorry but I really don’t appreciate that. I don’t appreciate seeing people like me blamed for their parents’ issues by virtue of being autistic. I sure as hell don’t think it’s better to be dead than to be autistic, and that kind of thinking has led to the murders of many autistic children. I reject the tragedy model of disability and I object to any characterization of autistic people as broken, useless, unwanted, or unhuman in anyway. Our lives still have value, and there is no reason antivaxers should feel the need to downplay our humanity in order to explain that autistic people have different needs than neurotypicals. But when a parent murders an autistic child, Age of Autism defends them in a way they would never defend the murderers of neurotypical children. In conclusion, the antivax community is dangerous to public health, ableist, and prone to bizarre reasoning and leaps of logic that Evil Knievel couldn’t make. I really see no reason to abandon science, logic, and my own health for that.

Thursday, May 26, 2011

I wish a title could hint at the incredible pain I'm trying to describe

I wake up to the sound of the bedroom door opening, several yards away from me.  I hear Sean pause in the doorway, probably looking at me, surprised to find me there.

I wince.  I can see the light shining brightly through the window even through my closed eyelids.  I can’t talk.  Everything hurts.  He walks into the office, probably assuming I’m still asleep.  It usually takes me a few seconds to regain the ability to talk in the morning, but today I’m having a nonverbal episode.  It will take several minutes before I can talk.

I’m on the floor in my living room, lying in the narrow space between the couch and coffee table where I had settled last night when I realized I couldn’t walk to the bedroom.  There is no denying the amount of pain in my back.  It’s harsh and unbearable.  I try briefly to sit up but I’m only inches off the ground when the muscles in my thighs and back spasm violently and I fall back down.

I have a pillow under me but it offers little comfort.  I had managed to drag a quilt over myself before I went to sleep last night, and spent hours staring at the ceiling and petting the kitten, who was unusually friendly as if she felt sorry to see me in such a horrible state.  The kitten was gone when I woke up, but when she hears me moving she runs from the hallway and sniffs my tear-stained face before curling up on the floor next to me.  I stroke her short multicolored fur wordlessly.  I was grateful for her presence last night.  She normally only sits still with me for fifteen minutes at a time but last night she spent hours sitting next to me.  She didn’t even get offended when I had to shift, which normally irritated her enough to make her leave in a huff.  Last night when my legs started to cramp or spasm and I had to move, she would stand up and wait for me to get comfortable before she sat back down again.  She knew I was hurt.

In the other room Sean is talking to someone whose voice sounds hollow and robotic.  I don’t know what time it is, but he should be at work or getting ready for it.  It sounds like one of his meetings, although I can’t be sure since I can’t make out any distinct words.  He must have decided to work from home today.

My back spasms cruelly as I shift my leg so it doesn’t press into the leg of the table.  I hold back a scream.  Even resting I feel like I've been beaten, like people kicked me in my back and legs for hours.  My pills are in the bedroom, so far away from where I’m trapped.  Sean is the only other person in the apartment, and I can’t call for him because I can’t talk right now, and I wonder if it would disrupt his meeting.  I take a deep breath, hissing in the air through my teeth, and carefully assess my situation.

My head is pointed towards the wall and I’m in a narrow space where it’s difficult to roll over.  My only way to escape is to sit up and drag myself towards the bedroom.  This will be difficult, because the muscles in my lower back and thighs, which I usually use to stabilize myself when standing or walking, are so sore that they are useless.  I still can’t completely make sense of this.

I had cortisone injections in February, but it’s May now.  They are good for three months.  I had them in my upper back, where the worst of my pain was at the time, where I had two bulged discs.  It’s not a good sign to need cortisone shots when you’re just 22, and believe me when I say you have to be really desperate and in pain to be willing to have someone jab you repeatedly in the back with needles while people try to keep you from moving.  It was a terrifying day but I was at the end of my rope then, convinced I was going to die soon, and I probably would have since I was taking 10 Vicodin a day, the 7.5/750 dose.  The codeine wouldn’t have hurt me but I was taking more than enough Tylenol to destroy my liver, and the pills did nothing for the pain and none of the doctors believed me.  I think they believed me a little more when I had the shots, and I went quickly from 10 pills a day to two 10 mg Vicodin that could easily manage my pain.  I rarely needed pills every day after that, and I’m still on the same bottle of pills now that I was prescribed after my procedure.

But it’s time for another round of shots.  My body told me that two weeks ago.  My mother scheduled an appointment, but I can’t go in till Thursday.  It’s Tuesday now.  I have six Vicodin left, six precious little pills that will do nothing to save me from this pain, and only one Flexeril.  I ordered refills last night through the Walgreen’s website but I need doctor approval and I’m not sure if I’ve proved myself to my doctor or if he still thinks I’m being irresponsible with my pills.  I allowed myself very few pills yesterday and it’s costing me today. 

The back has been bad for a while now.  It aches at the bulged discs in the thoracic region, where I had my injections last time, and it aches even worse in the discs in the lumbar region, which are both bulging and degenerated.  It causes sciatica, which sends nerve pain to my buttocks, hips, and through my entire leg.  I usually deal with this with Aleve and Vicodin, and I cut my Flexeril and take half when the sciatica makes my muscles spasm.  I normally find hot baths can relieve a great deal of the pain without the necessity of medicine, but that was useless earlier this week.  Our tiny, useless, 15-year-old water heater finally broke, and it took a while to convince the apartment management that this was in fact a problem. 

It’s worth mentioning that I’m a horrible slob, and to be fair so is Sean.  I’m normally the one who cleans the apartment and I let it slide badly over the last two semesters, due both to my disability and homework overload more recently.  I haven’t caught up with it since the semester ended because I didn’t know where to start.  But the owner was coming to look at the hot water heater yesterday morning, so I stayed up the entire night before cleaning.  I put away the Christmas tree that the cats had partially dismantled over the months since Christmas.  I picked up the graded papers, tests, and junk mail we had scattered all over the apartment and threw them away.  I worked hard.  Sean had done the kitchen before he went to bed.  I cleaned the living room, library, dining room, and bathroom from midnight to 7 AM.  They looked almost perfect by the time I was done.  I didn’t have time for the bedroom and office, but I could close the doors.

When Sean woke up the only thing I had left to do was the vacuuming.  But by that point I was so physically exhausted that I was shaking.  I hadn’t taken pain pills since I had started and my nerves were all screaming.  Sean was horrified when he found me, shaking from dehydration, hunger, and lack of energy.   The muscles in my legs were weak.  I remember my thighs shaking, the muscles repeatedly giving out.  Sean had to help me to the couch, get me food, and set me up with what I needed for the day before he could leave for work, because there was no way I was making it off the couch until he got home.  The landlord came at 9 and confirmed that our water heater was busted, and between 11 AM and 6 PM a newer, larger water heater was installed.  I was exhausted and spent most of my time not moving and reading the Hunger Games e-books Sean had given me to keep me busy and not depressed.  I hurt horribly, but I had accomplished what I had wanted to and that made me happy.  I was supposed to take a long, hot bath but I fell asleep from exhaustion before I could.  Hours later Sean laid down for bed and I woke up and felt the most horrible pain I had ever experienced.  I don’t know what caused it, but my thighs were now aching horribly where they had felt weak before.  I couldn’t sit up.  If you’ve ever had a torn or strained muscle, imagine feeling that in 50% of your thigh and over your entire back.  That’s what I felt, along with the normal pain in my spine that felt like grinding bones, and along with the nerve pain in my back and my legs.  I don’t know what happened but  my guess is that I had violent muscle spasms while I was sleeping and my leg muscles were damaged.

Sean carried me to the bathtub and I had a horrible meltdown when I discovered the water only got up to 90 degrees, not hot enough to relax muscles.  This triggered an argument, and by the time Sean figured out how to turn up the temperature on the heater I was angry and just wanted out of the tub.  He went to sleep and I stayed out in the living room, fuming and continuing the book I’d been reading.

The pain kept getting worse, and when I was tired I realized I couldn’t make it to the bedroom without calling him for help.  I rolled onto the floor, where I fell with a wince, and settled down for the night.  It was hard to sleep.  The floor wasn’t comfy and every which way I laid only made another part of my body hurt.  The muscles in my thighs felt like rocks under my skin when I touched them.  And then I woke to find myself trapped on the floor. 

I’m in incredible pain.  I’m hungry.  I’m thirsty.  I have to use the toilet.  I’m lonely.  I’m scared.  I have options.  I could find my pills.  I’m pretty sure they’re in the bedroom on top of my dresser.  I could call Sean, because I think I can talk now, but loudness will disrupt his meeting and I should probably only talk to him softly, which means I would need to stand by the door.  He doesn’t seem to hear me crying so I will have to be closer to get his attention.  I can’t cook so I would have to ask him for food.  I could take a hot bath.  I definitely need a toilet, as soon as possible.  Everything I need is on the other side of the apartment, and suddenly that seems like a tragically long distance.  But at least I know where I need to go.  The bathroom, office, and bedroom doors all meet at a close point, so I need to get there, ask Sean for food and medicine, and use the toilet and take a hot bath.

I know I need to move.  I try again to sit up and let out a shriek, then a hiss, then a whimper as I fall back to the pillow.  The kitten watches me, transfixed, and I sit up again, crying, and manage to get into a kneeling position before I fall flat on my face.  At least I’m pointing towards the hallway now.
I make a few more feeble attempts to stand, each ending in failure.  My legs are useless now.  My spine offers little support.  I give up and start crawling.  It’s painful still and strains my sore thighs to an almost unbearable point, and the shag carpet feels scratchy and harsh on my legs and hands, but I can do it and I can take my time.

I crawl slowly out from under the quilt, keeping my eyes down because I can’t look at the hallway and see how far I have left to go.  I feel like I’m regressing into childhood or into animalism and I hate it that my humiliation has come this far.  I don’t know how long I crawl.  I have to take a rest between the kitchen and dining room.  I start again and eventually I make it to the short L-shaped hallway.  I can hear Sean talking more clearly now but it all sounds like technical nonsense and I am afraid to ask him for anything.  I crawl into the bathroom.

The linoleum is cold on my hands.  My knee lands on the hard surface and it hurts like it always does when I kneel on non-carpeted floors, but then my knee pops out of place.  I think I scream and I lift my leg up but the knee pops back into place and I’m left lying face-down on the bathroom floor, watching strands of my messy red hair move in front of my face as I breathe.  I’m touching the toilet.

I try to sit up, but once I’m in a sitting position my back spasms and I can’t continue, even using the sink and toilet to raise myself into a standing position.  The muscles in my thighs and lower back tighten unforgivingly.  I stare at the floor in disbelief.  I should have known.  I couldn’t properly sit or stand in the living room.  What made me think it would work once I  got here?  And I am angry at myself, angry for wasting the time and energy and nearly killing myself to get to the bathroom when I couldn’t even get onto the toilet. 

I fall back to the floor, tears streaming silently down my cheeks and forming small droplets on the floor.  I hate myself for being so stupid, for being disabled in the first place, for insisting on cleaning yesterday even if it desperately needed to be done.  I have no idea if Sean will hear me from here and I hope he’s done with his meeting soon.

I lay on the floor for several minutes and I’m starting to nod off when the talking stops and the office door opens.  Sean stops in the doorway and I know he’s staring down at me and that he didn’t expect to find me face-down on the bathroom floor.

“Hi,” I say weakly. “Once I got here I realized I couldn’t get on the toilet anyway.”

“Kat,” he says in a strained voice, and I can’t tell if he’s disappointed, annoyed, or just sad to see me looking so pathetic.

“What time is it?” I ask.

“Almost 1.  I was sick so I worked from home today.”

I remember now that he’s been coughing a lot.  I hadn’t completely realized that he was sick, and I feel incredibly guilty for not noticing and for being too distracted by my own pain.  He had noticed my pain.  He’d been taking care of me.

“Do you want me to help you up?” he asks.

“Yes,” I say. “I’m not sure how to get up though.”  I try scooting closer to him so that he can grab me more easily but when I accidentally tense my right leg I scream, curse, drop still and try not to move again.  It will be hard for him to help me because I’m in a bad position and blocking the doorway.

He grabs me from behind under the armpits and pulls me into a sitting position.  My legs are in front of me.  “I can’t kneel,” I say. “It hurts my legs.  That’s why I can’t get up.”

He steps over my shoulder, putting his foot between my legs, and lifts his other leg over me so that he’s standing in front of me.  “What do you want me to do?” he asks.  “Do you want to be in the tub?”

“Need to pee,” I say. “Toilet will hurt my legs though.”

“How do you want me to help you?”

I try to clear my head, try to ignore the pain and focus on strategy.  “I can’t kneel.  You have to pull me from here directly into a standing position.”

He grabs my hands.  “Ready?” he asks.  I nod and he pulls me up.  At first it’s okay without having to use my legs but when I need my thighs to support my weight I start to fall forwards and I crash into him.  He catches me before I can collapse and I’m crying more openly now.  My cami has slid down and I’m exposed.  Sean reaches down and covers me back up, and he shifts me sideways.  It hurts every time I have to set my feet down but he manages to lower me onto the toilet in a sitting position.

“Ohgodohgodohgod,” I moan as the hard plastic of the toilet seat sinks oppressively into the flesh of my sore thighs.

“When’s the last time you had a Vicodin?” Sean asks.

“Fuck.  Last night?  I think they’re in the bedroom.”

“I’ll look for them,” he said, and he disappeared.  Alone, I use the toilet and stare at the floor when I’m done.  Sean brings me a glass of water and medicine and I take it gratefully even though I don’t know if my prescriptions are refilled or if I need to save the pill for an emergency.  This is the very definition of an emergency.

I explain to him what happened.  He sits on the edge of the bathtub.  “Do you want me to take you to the hospital?” he asks.

It sounds like a good idea.  I used to go to the hospital for my back pain, and this is definitely the worst pain I’ve ever had.  But I shake my head and smile even though it isn’t funny.  “They won’t believe me.  They never believe me.”  ERs are full of doctors who have never experienced pain that Tylenol wouldn’t fix, and a very young woman coming into the ER, unemployed and claiming to be disabled, acting abnormal, claiming to have pain but it doesn’t show up well on x-ray and she appears physically unharmed...I guess I look like an addict.  It’s hard for them to identify with me since it’s hard for anyone to imagine pain that large amounts of Vicodin won’t help.  It’s hard to believe that a 22-year-old has pain at all because that’s too young to have back pain.  No one wants to believe that the pain exists, and I don’t think I give them the emotional reaction they expect from someone who is in incredible pain.  It’s hard for people to identify with my suffering because my face doesn’t always display the emotions I’m experiencing.  I can feel the pain and I can describe it but I can’t act like a person in pain would normally act.  I tell them I have autism but they don’t know what that means, and they normally tell me I don’t look autistic or that I must be mistaken.  So doctors are useless at best, and irritating little pests who yell at me at worst.  One doctor at Memorial Hospital told me I should be ashamed of myself for thinking that hospitals were there to keep me from being in pain.  I’m pretty sure he thought I was an addict.

I close my eyes and wish that the doctors at the pain clinic could see me sooner, so it wouldn’t matter that I have so little Vicodin.  And because when I limped into their office they believed I was telling the truth, maybe because no one walks into that office unless their pain is very real.  The pain clinic doesn’t hand out oral medicine.  The only do interventional medicine, cortisone injections and the like.  Those are useless to addicts but a few days after they saw me for the first time I was walking around without help again.

“The hot water is working again,” Sean says softly. “Do you want to get in the tub?”

I nod and he helps me up and tries to lower me carefully into the tub.  I slip out of his grip when I’m nearly completely down and I land with a soft thud, but I just laugh.  “This water had better be worth it.”

It comes out pleasantly hot and I nearly overfill the tub because I want it to touch every inch of my body.  Sean sits on the toilet watching me, but I’m not good company today.  I just stare into space, wondering why I have to suffer through so much pain. 

He goes back to work and comes back when I call him to help me out of the tub.  I lay in the bed and Sean brings me the PS3 controller, my laptop, a fresh soda, my pills, even the small calico kitten.  I check my e-mail and to my relief my doctor approved the refills and they’re waiting for me at the pharmacy.  I haven’t eaten since yesterday in the afternoon, so Sean takes my wallet and heads to Walgreen’s to pick up the prescription.  I want him to have my ID to prove I authorized him to get my drugs.  He comes back with a sandwich for Subway and the drugs, and says they only asked him my birthday.  But he’s picked up drugs for me before.  When I really need them it usually means leaving the house is far more difficult.

He cuddles with me and I can feel what little relief the Vicodin had offered already wearing off.  I tell him that, and I try not to whine because I know he can’t do anything about it.

“A day and a half,” he says, stroking my messy hair.

I hug him and nod, but I don’t know if I can make it till Thursday morning.  Because I remember now something that I had forced myself to forget in February when the last round of injections healed my pain.  I had forgotten that there is a certain level of pain that makes you certain that pain alone can kill you, and if you stay there long enough you start to accept your fate. 

“I guess we’re just going to have to prepare for this to happen every three months,” Sean says.

“Yeah,” I say softly, and I wish I could defeat the pain altogether instead of banishing it for a short time.  But this is the best I have.  I hope pain can’t really kill a person over time.

Wednesday, April 13, 2011

An Open Letter to Robert MacNeil and PBS

To Whom It May Concern:

Hi.  My name is Kathryn Bjornstad, and I am an autistic woman.  I am a senior at the University of Missouri at St. Louis, a history major, due to graduate in December.  I’m 22 years old, and I am working on setting up a chapter of the Autistic Self Advocacy Network in St. Louis.

This month, as I’m sure you’re aware, is Autism Awareness Month.  As many feel awareness is no longer enough, it is also Autism Acceptance Month—and I am more in support of the latter.  Autistic people, like many other disabled people, are often discriminated against and ableism is allowed to go unchecked and unpunished in full view of the public, even in the media.

Which brings me to my point.  I saw a piece today on your autism documentary.  And I wasn’t too happy.  A lot of people weren’t happy.  You see, I have come to realize over the course of several years that my autism has not held me back nearly as much as ableist stereotypes of autistic people have, and the myths of autism are so pervasive that I am even discriminated against when I go to see the doctor. 

I was home alone when I read the article where you described autistic people (like me) as missing a key ingredient in being human, the most important ingredient:  Empathy.  I was stunned, hurt again by this stereotype that gets flung out every so often in the autism debate.  Autistic people don’t have empathy. 

When I found out I probably had autism, I was 17.  I remember looking it up on the Internet and being horrified by the descriptions I found of emotionless people, children turned into empty shells of people.  They didn’t have empathy.  That was what I was told.  And I was terrified that I might be one of them.

But things changed.  I grew up.  I found out more.  I met other autistic people.  It turns out that empathy thing is a complete and total myth.  That’s right, you just wrongly accused almost 1% of your audience of being emotionless when they aren’t.  There isn’t a real, concrete definition of empathy and it can be used to describe a number of different things.  But the stereotype of autistic people living without empathy is as harmful as it is pervasive.  When I try to stand up for myself, I will hear mothers of autistic children say that I can’t possibly know what I’m talking about.  I don’t understand their position because I lack empathy.  My views can therefore be entirely ignored, no matter what I say, and no one sees the irony.  I might perceive someone who calls another person emotionless without thinking first of whether it would hurt the person’s feelings as, well, lacking empathy.

I cried reading your article, watching the interviews, thinking of the millions of people who would see it.  The so-called educational documentary completely ignored the views of autistic people, asking only those who knew them what autism was.  And because of the blatant ableism inherent in the interview selection, no one who watched it would suspect that autistic people have feelings.  Millions of people will now feel free to fling that insult at people like me, say I don’t understand them because of my lack of empathy when I cry about it, and use it to diminish the importance of our words.

And the description of autistic people as causing random violence is even worse.  The vast majority of the autistic population is unemployed, and do you wonder why?  It’s not because we’re violent—we’re often the victims of violence, often from our caregivers and our parents.  It’s because the stereotypes that are spread about us are so  horrible that no one would ever consider hiring us, so even autistic people who are searching for jobs or who are qualified for jobs will often find themselves overlooked.

My fiance came home this evening from work at 4:00.  We had dinner and talked, and he was tired, so he decided to go to sleep.  I curled up next to him and laid my head on his chest.

After a few moments of silence, I said, “Sean?”

“What?” he asked, the words muffled by his sleeping mask.

“What’s empathy?” I asked. “Isn’t it like sympathy?  Why do people say I don’t have it?”

He unhooked the mask and set it aside.  “There’s two definitions,” he said. “One is feeling what other people are feeling, feeling sad when they’re sad, and so on.”

“But I have that,” I said.  “I hear about someone’s family member dying and I’m sad for days, even if I didn’t know the person who died.”

“I know,” Sean said.  He propped himself up on his arm to look at me.  “The other definition is to be able to tell what someone’s feeling by looking at them.  And that one…you have a little bit of trouble with.”

I chewed my lip, remembering the cartoon smiley faces I’d studied in grade school and how the emotions looked so different on human faces.  “But…I try,” I said. “And sometimes I can tell.  And I try to imagine how a person might feel given what’s going on at the time.”

“And that’s empathy,” Sean said. “You have it.”

I sighed.  “But…that guy from NBC.  He’s going to say those things and people will believe him.  Even though it’s not true.”

“He’s a dick.  Lots of people are dicks.  You don’t have to listen to them.”

“I’m supposed to fight back against things like that,” I said.  “Children are going to see that program and think…” I wiped away tears.  “They’re going to see it and think they’re monsters.  And so will their parents.  And it’s going to hurt them.  Not me, because I’m an adult and I know better, but it will hurt them.”

Sean stared at me and I closed my eyes, letting tears roll down from my cheeks onto my arms.  “That’s not fair.  You can’t go on TV and say—and say that black people or Muslims aren’t human.  People wouldn’t let it happen.  So why is it okay for us to not be human?”

“Hey.”  He stroked my cheek.  “It’s going to be okay.”  I kept crying and he held me as I calmed down, and eventually he fell asleep.  I couldn’t sleep.  I started writing.

You say I have no empathy.  What I want to know is, where is your empathy?  Where was your empathy when you stood in front of a camera and told millions of people that 1 in 150 people were barely human, that many of us were violent, without thinking of how serious the consequences would be for us?  Autistic children are being arrested by people who don’t understand what a meltdown is.  Autistic people are unable to get jobs.  Autistic people are being subjected to horrible and unscientific treatments in the name of curing autism.  That is not justice, and by failing to speak with autistic people themselves you are failing to present an accurate picture of us.  By spreading untrue and harmful stereotypes you are encouraging discrimination against us. 

Please consider speaking with autistic adults about how they see themselves and their disorder, and you will understand why your words are so horrifying to us.  You will understand how wrong you are about autism and empathy, and you will learn a lot more about autistic people than their doctors, teachers, and parents could teach you.

I am Kathryn Bjornstad, and I am a human.  I deserve your respect.  I have not yet received it.  I dare you to change my mind about you.