by Ekie

We’re selling our house.  On the realtor’s sheet it asks if the house is handicapped-accessible.  Well, technically, no.  But also, technically, yes.  Because it is perfectly accessible and modified for one particular person’s disability – mine.  There are no noisy lights, there are lots of comfy couches, there are earplugs available for when it is not quiet, which it usually is, and there are no noxious smells.

It occurs to me, however, that true accessibility means not just the letter of the law.  It means accomodating everybody, and everybody is different in their own way.  We all have different needs and wants, and we all have different definitions of accessible.

So, for this May 1st, a list of What Really Accessible Means To Me.  Also, Fantastical Access Dreams

- no noisy lights. 

- no lights that flicker on and off really fast (why is it so hard to make a lightbulb be both autism-friendly and environmental-friendly?  I don’t know.)

- no noisy heating systems.  or electrical systems.  no alarms that go off unexpectedly.

- no smoking anywhere, ever.  saves the planet, saves lives, saves my sanity all at once.

- no b.o.  I know it’s natural and I ought to get used to it, but hey, this is my fantasy, not real life.

- no perfumes or colognes

- no people who stare and stare instead of just asking

- nobody uses the word retard, ever

- public bathrooms where they have adult-sized changing tables at waist level.

- playgrounds with rubber surfacing instead of woodchips

- 24-hour notice on everything – from big disasters to minor inconveniences

- jobs that are based on how hard you work and how much you get done, instead of how many hours you show up there

- vegetables that taste decently to my particular palate

- public playgrounds for adults  (I love fantasies.  in my fantasy, these playgrounds have big trampolines.) 

- handicapped swings in parks that actually have the straps on them

- paint that doesn’t smell

Okay, so, yeah.  Never gonna happen.  But maybe, just maybe, if we get to the point where ramps and Braille are seen as a matter of course, not a matter to fight over, we’d also get to the point where when I complain about those stupid flourescents, people actually take me seriously instead of just brushing me off.

And hey – what’s wrong with dreaming?

(8:32 pm.  Thursday.)

by ekie

so my mother is putting our house on the market.  our house.  MY house.  where I have lived for exactly the number of years I’ve been alive plus the time I spent gestating.  Where she has lived for so long, she’s lost track, but she’s thinking it’s a bit more than 30 years.  She’s gone through two husbands, four dogs, one cat, two rabbits, countless goldfish, and has successfully managed to get 2 out of her 3 children out of the nest and is ready to Downsize and Just Leave Already.

She has informed me that, regardless of my job (which doesn’t exist) she will always have a room wherever she lives for me, which is nice, but in the meantime, we are Preparing to Move, and it sucks.  It really, really does.

She explained very patiently to the realtor and the stager (who is someone who tells you how to make things pretty so people will buy the house) that her daughter has Aspergers and has problems with change, to which they replied fine, we’ll do her room last.  But in the meantime, there is a big ugly metal pod-thing in our yard which will soon contain about half of our possessions.  A good fourth of our stuff is getting recycled/sold at a church rummage sale/given away.  We are putting in a new stove and sink and countertops only to leave them for the new owners.  My mother is going completely nuts trying to get everything done before we officially go on the market.  I am just trying to stay sane.

I hate moving.  I will never, ever be able to say this enough times.  I hate, hate, hate, HATE it.  True, I have never really done it, except to go to college, but it really sucks.

Unfortunately, taxes are too high here, the snowplowing bill is too high here, and our yard strongly resembles a jungle we no longer want to deal with.  And so we go, despite the fact that every single iota of my Aspie-ness is screaming out in pain and frustration at all the changes, changes, changes!!! happening to my world, my safe, stable world, right now.

And so I learn – that just like everything else in life, it will be gotten through.  That the question ‘Do I want to keep this?’ when turned into, ’Do I want to pack, wrap, carry, and unpack this?’ changes many of my answers.  That you shouldn’t have to pay for boxes, but people only give away big ones, not book-sized ones.  

Also, that I hate moving.  But I think I said that already. 

(7 pm.  Sunday.)

There are a lot of lists that start out saying, ‘you know you’re from’ or ‘you know you’re a ‘.  But for different people, the list I am trying to make could say different things.  ‘You know you have a disability when’ ‘you know your child has special needs when’ ‘you know you’ve been spending too much time on disability blogs when’ – so – I made up a catch all title to include everybody, people with disabilities, people in the disability field, parents, etc.  If you make your own list – and I hope you do! – feel free to modify the title as you see fit.

Anyway, here’s mine.  Alternate titles could be ‘You know you’re a have an Autism spectrum disorder’ and ‘You know you’ve been PCA’ing too much’ 

  You know you’re in the disability community when….

- your client’s mother asks how your client is doing, and you reply without a hint of irony that except for a six-point-five minute seizure, everything’s great

- you have found yourself telling a preschooler to ‘quit playing with your g-tube’

- you see nothing wrong with doing a bolus feed in public

- you have ever told a shopkeeper that you would buy something from them, but you just don’t feel right buying from an inaccessible store

- you have ever not gone into a store or restaurant because it is not accessible, despite the fact that you can walk just fine

- somebody, anybody, being potty-trained, no matter at what age, is a huge, magnificent, wonderful event

- you have ever read labels at a grocery store to find the products with the highest fat content for a client

- you thank a child for waiting until she is out of the shower to have a big seizure, as moving a prone body when it is slippery and wet is very hard

- you compliment someone on the designs on their AFO’s

- you have approached a complete stranger to ask where they got that cup-holder on their wheelchair, as your boss has been looking for a similar one

- you know that service dogs are just as likely as other dogs to eat poop, garbage, and other disgusting things, and therefore, have a policy to never, ever touch a service dog even when they are off duty because who knows where that mouth was?

- you complain about the loudness of flourescent lights

- an awful lot of people think you have allergies, which you don’t, because allergies are a lot easier to explain than sensory sensitivities due to an autism spectrum disorder

- ‘broken elevators in the building’ days are a legitimate excuse for people to miss work

- you decide to start using more sign language, and it takes you a good couple weeks to realize that ‘regular’ people think you’re blowing them a kiss when you say ‘thank you’

- you think that the most unrealistic thing happening on Greys anatomy is not all the sex in the on-call room, but that an Aspie doctor would get to be that well-renowned and not have better patient-care skills

I should mention that almost all of the above came directly from my own life, and are not made up to sound funny – they just are funny!

So…..what would go on your list? 

(ps.  it’s  Saturday, 12:30 pm.  weird that it’s the middle of the night in Australia.  just weird.)

by ekie

For the record, I don’t think that I’d make a very good protester.

I don’t really like standing around all that much.  I can walk for miles quite easily, but standing tends to tire me out a lot, I don’t know why.  I also don’t like noise, for the simple reason that it is loud, and it hurts my ears.  From experience, I do not like the physical properties of large groups of people with disabilities, because between my clumsiness and their equipment, I get my feet run over, and that hurts my feet.  Also, some people who cannot speak use their horns to protest, which is great, except that said horns can be quite, quite loud and I jump about ten feet in the air every time one goes eeOH!  And when people start chanting I start covering my ears.  Not to mention all the body odors you get when a lot of people are crunched together yelling their heads off.

I also must admit that I haven’t been to the actual movies in at least five years, because 1, I’m cheap and 2, for a person who is sensory-defensive, the whole atmosphere of a movie can be overwhelming.  Also, what if I don’t like the movie?  I’d rather not spend the $10 when I can, instead, get movies I enjoy from the library for free to watch at home. 

All that being said, anybody in my area want to go and protest Tropic Thunder?  Because if there was one on my area, forget about my feet, forget about my ears.  This is about my soul.  Making fun of my people hurts my soul.  Yes – my people.  My people, your people.  People with disabilities.  The only minority group which anyone can join at any time and which, if you live long enough, you are almost certain to be a part of at some point in your life.

Somebody wrote into my local paper today saying that PWD’s just need to learn to laugh at themselves, to get a sense of humor.  I happen to have a fine sense of humor.  I can laugh at myself with the best of them, because if I didn’t learn to laugh I’d spend my whole life crying.  PWD’s have great senses of humor, especially dark, ironic, sarcastic humor, which is my favorite kind.  The difference is that when people laugh at the word retard, they are not laughing with us, they are laughing at us.  And who likes being laughed at?

The studio executives, I think, must have a brain that is as different from normal as mine is.  Because my brain, my heart and soul, ache and writhe in  actual pain at that word so much that I think a neuro-typical must also be in agony.  And if the executives aren’t, then they must be missing some crucial link in their brains, some bit that makes them human.  Some bit like compassion.  Some bit like love.

by ekie

I didn’t get the job.

I knew that I shouldn’t get my hopes up.  Yet despite that, I did.  I got my hopes up.  I honestly believed that the prayers of my mother, that the chanting of a woman I knew (she said her chanting had never failed) and that the whole positive-image thing would work, that I would get it, that I could do it.   But maybe the gods and goddesses could see right through me to my atheistic soul and decided to spite me, or maybe I made a mistake in the interviews, or maybe I just didn’t try hard enough, though I tried as best I could.  I went in for four interviews.  Four.  Got dressed up, in clothes that don’t belong anywhere in summer, drove the forty minutes in, parked, shook hands, smiled.  And they didn’t even bother to call me to say I didn’t get it.  They just said they’d get back to me by Friday if I got it, and it’s Monday now, and so, I didn’t.  Is it really so hard to just pick up the phone or shoot an email?  “Sorry, but………”

I guess it is. 

It’s been explained to me that I experience feelings differently from neuro-typical people.  NT’s have emotions in their heads.  I have them in my body.  I have a physical reaction to happiness, a physical reaction to sorrow.  Which is why I normally refuse to get my hopes up about anything until it actually happens – because disappointment can be so painful that it literally immobilizes me. 

Lesson learned: don’t get your hopes up.  Because when you float up, you will crash down, and crashing hurts.

In the meantime, I push on through the rain (why is it 60 degrees and raining in the middle of summer?) and contemplate making big signs that say KIKE and showing up at Ben Stiller’s premiere of Tropic Thunder.  People would get mad, and I would laugh and very patiently explain that it is funny, they just have to lighten up a little.  Jews are 1-3% of the US population.  People with disabilities are 20%.  Yet why is it that if we offended Jews we’d get arrested, charged with hate crimes, the FCC would never allow the word ‘kike’ in a movie without rating it R, yet the word ‘retard’ can be shouted out for all the world to hear and nobody cares? 

9:37 am.  My time.  Monday.  Apparently it’s already Tuesday in Australia.  Not here.

by ekie

I feel as if I’ve been a remiss member of this blog.  It’s not that I’ve been neglecting it, just that I keep starting entries and not thinking that they’re good enough, or disability-related enough, to be posted, so I don’t.  So today, here’s a mostly-non-disability related update.

1.  Work on the living room (see last entry re: stupid roofers) continues.  I am being absolutely of no help to anyone because I think all shades of beige and white are the same and would just as soon buy the really cheap carpet.  My decorating tastes run to flowered wallpaper and farm animal borders.  I like bathrooms with mermaid or fish themes.  Unfortunately, my mother wants to sell this house in a year or two, and potential buyers are not so interested in those things.  Also, on the advice of a realtor, half the curtains in the house are coming down and being replaced by roman shades or weird fake-wood panel things.  I miss the curtains.  The house misses the curtains.  I think the house feels naked.  If it had arms, it would be trying to cover up its’ poor, naked windows. 

2.  I am going through a real period of soul-searching regarding myself and my diagnosis.  I finally tried the local Aspergers association, and I mean really tried, not just one meeting, and to my surprise am making good connections and possibly even friends there.  This particular Aspergers Association sees NLD as a sub-type of Aspergers, indistinguishable from it, and the more I learn about Aspergers, the more I see how my own prejudices against autism were preventing me from accessing some great resources and meeting great people.  The stigma of autism prevents the NLD community from joining the Aspergers folks, but that’s a shame, because the Aspergers folks are a lot better connected and do a much better job of taking care of their people than the national NLD organization does.  I feel that I have finally found a place where not only do I fit in, I’m valued, and my opinons are valued.  Best of all, the women are just as outspoken as I am.

3.  No job nor job prospects yet – ugh.  This is really getting me down.  I am picking up some work with an absolutely adorable 5 year old with special needs and maybe some more babysitting, but I’m really getting soured on going to interviews and trying my hardest, and not having people ever bother to call me back – even when I call them and ask them just for feedback on the interview process when I didn’t get a job. 

4.  It’s summer, though, so if I have to be living at home, at least it can be in this gorgeous weather, with the lake nearby and our first beach trip coming up, and huge broiling thunderstorms soaking my vegetables.  So far I have produced a half-dozen tiny green tomatoes, some quite decent spinach and three vigorous squash plants with no squahes as well as a dozen gladiolis with no flowers.  My lupines, zinnias and snapdragons from seed all failed.  My sweet peas from seed came up great but no flowers.  I know miracle-grow is terrible for the environment but I found a packet of it that we bought some other year and, since it is already bought and cannot be returned, think I should put it on my vegetables because, you know, it really works.

5.  I need the mason, who was due twenty minutes ago, to come now, so I can take my walk and then go out shoe shopping, again.  I have been shoe shopping for a week with no success.  Why is it so hard to find totally flat, not totally ugly sandals?  I can’t wear heels due to my motor problems – any sort of heel even a half-inch one.  I found the *perfect* pair online but apparently my size does not exist.  Stupid feet.

Also, I’ve noticed that whenever I post, it says that it’s tomorrow.  For the record, right now, it is today, nine minutes to eleven on Tuesday, not near 3 pm on Wednesday.  I guess that is Australian time?  Weird.

 by ekie

 (n.b.  I don’t know how to blog against something.  I can push against something or protest against something, but I only know how to blog normally.  but here goes anyway.)

            When I was maybe eight or nine, a new store opened in a mall near my house, and on my first visit there, I happened to see one of their employees.  She had dwarfism.  I had never seen a person with dwarfism before, except in the movies, and I was absolutely, positively terrified of her.  For months to come, I would make a family member go into the store before I did, to make sure that that super-scary person was not there.

            At that age, I had no idea of my own disability, and had very few experiences with people with any type of disability.  I did not, in fact, associate the employee with dwarfism with disability at all.  I associated her, odd as it may seem, with magic. 

            Magic? Yes.  I was a lonely kid, and I spent many hours alone in my room, reading book after book about elves and wizards and talking animals and, well, dwarfs.  They featured prominently in one of my very favorite series, the Chronicles of Narnia by CS Lewis.  Unlike most children, my magical thinking persisted well into elementary school.  (I believed in Santa Claus until I was ten.)  In a lot of children’s books, kids from today are transported back in time by some magical being, and I was absolutely, positively, not going to let that happen to me. 

            Thus I became an ablist.  It was my first experience of intentionally discriminating against someone based on their disability, but it would not be the last.

            Everyone has prejudices.  We cannot help it.  We are shaped by the beliefs of those who raise us and the culture we grow up in.  Children are not born hating others, they are not born crossing to the other side of the street when an Other is coming towards them.  They learn and absorb the lessons that their elders teach them, intentional or otherwise.

            Luckily for me, after eighteen years of seeing people with disabilities as Other, I had the opportunity to go to a wonderful university where I took courses on race, class, gender, and disability, and I became acutely aware of my own prejudices and my own background.  I was exposed to people of all races and cultures and abilities, and grew to be at ease among those who are different than me, those who are Other.  I realized my own racism, I realized my own ablism, and I worked to not be racist or ablist or classist.  Today, with disability a part of my everyday life, I am more aware than ever of ablist attitudes, and I constantly re-examine myself, even though I do not know if the worrying does any good. 

            The problem, I think, is that people, myself included, tend to define ablism as it relates to visible disabilities, and not as it relates to invisible disabilities,  even though both sides experience it.  There are some disabilities which are always seen as valid, and there are others which are not.  At disability events, I walk around at ease and am seen as someone without a disability, or as a PCA.  I sometimes choose to identify myself as a PWD, but sometimes I do not, because I never know what reception I’ll receive from anyone.  Even among ‘my people’, when I say I have a learning disability, people expect me to have trouble reading.  When I say I have an autism spectrum disorder, they expect me to be over there in that corner, flapping.  I have nothing against people in either category, I just do not belong there. 

            Why should anyone deny another person’s validity?  Why should I deny my own?  I do not know, even as I continue to do it.

            People with disabilities, however, are unusual in that they very often have the ability to see beyond their own prejudices, and to stop, think, and question their own assumptions.  As I become braver and speak out about my own disability more, I find that many people would like to understand, and are willing to try.  Somewhat ironically, my social skills tend to be better in disability settings, because I do not feel the same constant pressure to be perfect that I do in other circles. 

            I have come to the conclusion that ablism, or racism, or any other ‘ism’, is not necessarily cured by freeing oneself of all pre-conceived notions, or by treating everyone exactly the same.  Indeed, I am unsure if it is ever possible to free oneself of all inherent cultural baggage.  What can be done is that people question themselves.  They acknowledge their own backgrounds and upbringings and the biases they bring to the table, and they re-examine their beliefs to see if they are really true.  Then, if part of oneself or society does not seem to be ideal, people work to change it.

            The basic fact is is that everyone is valid.  All cultures are valid.  All disabilities are valid.  We are all truly equal.  It’s not really that radical of an idea – to sit around a table and be seen not as paras or CP’s or Blacks or Amish or anything, but as just People.  To empty our cultural baggage and to say, ‘This is the beginning.’  

            Of course, if all people, especially lawmakers, truly thought all people everywhere were equal to themselves, then they would have to acknowledge that all people deserve basic things like food, water, education, shelter – all people, all over the world.  And then we would not only have a new foreign-policy doctrine and the defeat of ablism, racism and prejudice of all types– we would have world peace.

Spring has finally come to my neck of the woods.

The air is warm, kids play outside, forsythia and hyacinth bloom, and all the little pots of seeds I planted on the patio are showing tiny shoots of green.  Today, the trees popped – the green blooms came out.  All of them, all at once.  They weren’t here yesterday, and they are today.  Nice.

Spring means Patriots Day, which is the day that, quite a bit ago, there may or may not have been an actual battle between the Redcoats and the Minutemen, but there defintely was some sort of skirmish, and marching, and Paul Revere quite possibly had something to do with it, but also some guy called William Dawes, and a woman.  I think.  My school system’s version was big on the part that our particular corner played in it, (and the fact that we beat the British) not so big on things like actual facts.  Anyway, schools are closed for spring break, and since it is a state holiday and lots of people don’t have to work (though lots do) they hold the Boston Marathon. 

I got there early, chose a spot on the shaded side of the street, but was not early enough to see the visually-impaired runners, who go first.  Then come the police cars and motor cycles, then come the mens wheelchairs, and the crowd, pressed up against the Jersey barriers and along the sidewalks of the town, go wild.  They scream their heads off, GO GO GO!!!  They whistle, clap, ring cowbells.  The wheelchair runners tend to come one by one, although one guy seemed to be tailgating another.  The women wheelchairs come next.  The crowd again goes wild.  The wheelchairs are shiny, low to the ground, three-wheeled.  Some are powered by hand cycles, others by side cycles.  GO GO GO GO!!!! YOU CAN DO IT!!!! YAY!!!!

There is a pause of a couple minutes, because the start times are staggered and, you know, they had to run a decent bit of the race before getting to this particular town.  Then the elite women runners come, in a tight pack, and the crowd is crazy.  Less elite women.  Still crazy crowd.  Elite men – whoo hoo!  Clap clap clap.  Yell.

After a while, though, when the more ordinary runners, the runners who are your next door neighbor, or the kid you went to high school with, are going past in thick packs, your hands get tired, so you stop clapping.  And your voice gets tired, so you stop yelling so much.  You yell out names – if you ever run a marathon, remember to write your name on your shirt so people can yell it.  A random wheelchair user, a runner with a visual impairment goes by, I cheered more, but after a couple hours of runners going, and going, and going, they all sort of blur together, and the crowd is quieter, talking among themselves, looking out for people they know in the crowd, but considering the fact that neither I nor the people standing near me could figure out when, exactly, Lance Armstrong passed by (and we know he did), it is a very tough task to find an individual person.

And here’s the thing.  Every single one of those runners was running that very difficult race, all twenty-five thousand of them going those twenty-six-point-something miles, and yet, only the elites got the biggest cheers.  Only the fastest, only those with visible disabilities.  I’m positive that within that race, there were many – cancer survivors, depression, domestic violence survivors, veterans – who deserved just as loud accolades, but they blended in with the pack, and so were not seen. 

We see the first, we see the most visible.  We do not always appreciate those who come later, though they continue to fight the same fight.  We had a ceremony, decades ago, when the first curb ramp was installed in California, but we don’t appreciate the fact that towns and cities continue to put in curb ramps when needed, continue to try and bring access to their constituents.  We remember Helen Keller and Anne Sullivan, Ed Roberts and Charles Carr, but we forget the fact that people everywhere are still working to address the same issues that they advocated for, still pushing the same agenda of access and education.  There are so many of us now, though, that we can all blur together at times, and so people get bored.  They stop clapping.

The people in this race are tired.  The polio survivors who led the charge for independent living are reaching retirement and PPS.  Look around disability circles, and it seems like the mantle is being increasingly taken up by parents, and not by young people with disabilities themselves.  I wonder, and I worry.  Does my generation take the ADA for granted?  With global warming and climate change, do twenty-somethings not identify anymore with the disability rights movement?

We have to keep going, even when no one is clapping.  We have to keep cheering others on, because just like the marathon, disability is a universal experience, and although we may not agree on many things, we are all in the same race.  We all keep running towards the same goal – access, inclusion, happiness.  Parents of children with disabilities, adults with disabilities, advocates without disabilities, we are all toegether, and we need to acknowledge that fact and work to diminish the divisions in the disability community. 

Spring comes, and the earth is warm and fertile, open to change, open to new growth.  And someone calls your name.

The Hardest Part

By ekie

            When I heard of this Carnival’s theme, the answer to the question, ‘What is the hardest part?’ came swiftly, unbidden.  The answer lay there in my mind and sank into my body, to settle into the solid rock of pain with which I am so familiar.

            The hardest part of having NLD is the loneliness.

            There, I’ve said it, it’s out.  I don’t know how I dare to be so personal on the internet, but I am, if only for the hope that the next time you have a conversation with someone with whom it’s a little bit difficult, you’ll maybe give them a second chance.

            “You have friends.”

            People say this, and it is true.  I do have friends.  Of a sort.  A colleague sort, a see-you-in-class sort.  Only now my classes have ended for good.  I’m the only person I know who came out of high school, college and graduate school without a single person who bothers to keep in touch with me.  I sent Christmas cards, letters, emails, phone calls, but they all go unanswered, and after awhile I took the hint and shut up.  Now I have a few acquaintances in the disability field, and one in particular I would call a definite friend, but all of them already have their own circle, their own best friends, and I know that they do not need me as I need them. 

            I understand that it is hard to be friends with me.  I really do.  Who wrote that book with the wonderful title, ‘It’s so hard to be your friend?’  I want to say Rick Lavoie, but I may be wrong.  Anyway, I read it, and I understand.  I veer off-topic, I say inane things, I don’t remember faces, and I can’t go anywhere with very loud music or thick crowds for a long period of time because of my sensory issues. 

            People say, but you are so wonderful, you have so much to offer.  And I know that this is true.  I am loyal, I care about people, I love an intelligent conversation and a good laugh.  They say, if you only tried harder, took a class, went out more, – but I’ve tried all that, and I just can’t summon the courage to dance alone. Everyone has an answer to all of my problems, but none of these people ever call me up on a Saturday night.

            I understand why all those people who signed my yearbook and promised to stay in touch never did.  When lives get busy, the complicated gets dropped, and being friends with me takes a little bit of effort because I am a little bit complicated, and so I get dropped.  I’m not angry at those people.  I just wish I could have known before I invested emotionally in a relationship.

            I’ve tried the internet and I’ve tried Aspie social groups.  The internet is fine, it filled my needs for a long time, but now I need more.  I need physical connection, someone to go on walks or to the beach with.  Aspie social groups don’t work either, because I do tend to have more social skills than the average Aspie and am more socially oriented than they are, and frankly, conversations tend to stall a lot when you have two people with poor social skills.  I like conversations to go fast, but although I do know how to compensate for my own deficits, I can’t quite figure out how to compensate for others, if that makes any sense. 

            I know that once I get a job, being in an office all day will totally exhaust me, yet give me more connections to others.  Once I move into the city, I’ll join a church or a social club.  Where I live now there are few opportunities, and being unemployed, sitting alone all day, does not exactly cause me to be in a better mood.  But I wonder – I had all those opportunities for four years of college, yet nothing worked out.  How do I know that any of my dreams will either?

            It’s such a simple thing.  I’m not asking for riches or world peace, or even a boyfriend, I won’t let my dreams go that far.  I just want somebody to be able to call up on a Saturday night to watch a movie with, go on a hike, go swimming with in summer, to tell about my cousin’s new baby or the book I’m reading.  Right now, I have my mother, who is wonderful, we get along great, but to be honest, I’m really looking for someone under the age of thirty.

            I could do with more fine and gross motor skills.  I’d like to be able to play sports.  My sensory system is so out of whack, I can’t drink from our new bathroom sink because I think it tastes so bad.  (It’s been 3 weeks, and nobody else thinks that the water tastes like pure metal.)  I wouldn’t mind being able to balance a checkbook or understand science more.  These things, though, are just annoyances.

            It is the loneliness that is hard.

            It is the loneliness that causes the pain, at random times of day, to cause tears to leak out of my eyes. 

            I can hold a conversation, make small talk and eye contact.  I learned everything I could about social skills, but apparently it wasn’t enough, and so really, I can only come to one conclusion.

            Loneliness cannot be the hardest part about NLD, because that would be saying that NLD is the cause of my loneliness.

            No.  It’s not the NLD, not the neurological quirks that make people steadily reject me, over and over.

            It’s just me.

by Ekie

I was very angry yesterday to read of one lawyer’s approach in the trial of a boy, who happens to have Asperger’s syndrome, who killed another high schooler last year.  Read the article here: http://www.boston.com/news/local/articles/2008/03/07/odgren_hearing_focuses_on_aspergers/ and tell me – have you ever known any violent people with Asperger’s?

 Because forgive me if I’m wrong, but I’ve known odorous people with Aspergers, rude, uncouth, badly-dressed, socially awkward people with Aspergers, but I’ve never known anybody who was violent.  The guy’s lawyer said that people with Asperger’s often have an obsession with weapons.  Really?  And how many people with Asperger’s has he known?  I’ve known plenty, and not one was obsessed with weapons.  Trains, yes – are trains a weapon?  Outer space, dinosaurs, human anatomy, race cars, rabbits – nope, not a violent topic on the list.

 I am currently obsessed with the television show, ‘Bones’, which has a very positive portrayal of a person with Asperger’s on it in the character of Dr. Zack Addy.  He is smart, articulate, accepted and embraced by his peers, admired for his skills, and incredibly attractive. (unfortunately, I learned when looking the actor up that not only is he a good 10 years older than he looks, he’s gay in real life.  damn.)  Anyway, this guy on TV is obsessed with dead bodies, but that’s what he does for a living, and that is the closest I’ve ever heard of anyone with Aspergers being violent.  (I’ve known people with ASD’s who are violent, but it is almost always unintentional and due to communication difficulties.)

 The article also implies that people with Aspergers are incapable of premeditation, which is just so ridiculous that I cannot fathom how a man got away with saying it in open court without someone crying ‘Liar!  Liar! pants on fire!’  Premeditation:  I feel hungry, I think of a cookie, I go into the kitchen and eat the cookie.  I feel angry, I think of sharing my anger, I write a blog post.  Except, in this case, the kid felt angry and stabbed another kid to death.

 I’m not going to make a judgement on the case – I don’t know whether the adolescent should be locked up for life, is guilty or what – I’m only saying that Aspergers syndrome was represented wrongly in this case, and that I do not think a person’s ASD should neccessarily be at the center of the case when they commit a violent crime.  It is perfectly possible to be a pedophile, or an arsonist, or whatever, and to have that part of you be unconnected to the ASD.  (Although I haven’t known any pedophiles or arsonists, so I don’t know who I am to deign speak to them.)