All day I think about it, then at night I say it. Where did I come from, and what am I supposed to be doing? I have no idea. My soul is from elsewhere, I'm sure of that. And I intend to end up there...Who looks out with my eyes? What is the soul? I cannot stop asking. If I could taste one sip of an answer, I could break out of this prison...I didn't come here of my own accord, and I can't leave that way. Whoever brought me here will have to take me home.

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24 November 2013

This Is Why Poor People's Bad Decisions Make Perfect Sense

Photo by thisisbossi

Below is a blog post on poverty that was published via The Huffington Post. Though poverty and disability are separate topics, the two often go hand in hand. The author's honest straightforward writing style, while tackling a heartbreaking issue that has no easy answers, touched me and got me thinking more deeply about how we define living life, and what it takes to ensure that all of humanity has access to equality, happiness, and fulfillment while we're here on earth doing what we refer to as living life.

Click here to be taken directly to the Huff Post printing. Or you can read it reprinted here:

There's no way to structure this coherently. They are random observations that might help explain the mental processes. But often, I think that we look at the academic problems of poverty and have no idea of the why. We know the what and the how, and we can see systemic problems, but it's rare to have a poor person actually explain it on their own behalf. So this is me doing that, sort of.
Rest is a luxury for the rich. I get up at 6AM, go to school (I have a full course load, but I only have to go to two in-person classes) then work, then I get the kids, then I pick up my husband, then I have half an hour to change and go to Job 2. I get home from that at around 12:30AM, then I have the rest of my classes and work to tend to. I'm in bed by 3. This isn't every day, I have two days off a week from each of my obligations. I use that time to clean the house and soothe Mr. Martini and see the kids for longer than an hour and catch up on schoolwork. Those nights I'm in bed by midnight, but if I go to bed too early I won't be able to stay up the other nights because I'll fuck my pattern up, and I drive an hour home from Job 2 so I can't afford to be sleepy. I never get a day off from work unless I am fairly sick. It doesn't leave you much room to think about what you are doing, only to attend to the next thing and the next. Planning isn't in the mix.
When I got pregnant the first time, I was living in a weekly motel. I had a minifridge with no freezer and a microwave. I was on WIC. I ate peanut butter from the jar and frozen burritos because they were 12/$2. Had I had a stove, I couldn't have made beef burritos that cheaply. And I needed the meat, I was pregnant. I might not have had any prenatal care, but I am intelligent enough to eat protein and iron whilst knocked up.
I know how to cook. I had to take Home Ec to graduate high school. Most people on my level didn't. Broccoli is intimidating. You have to have a working stove, and pots, and spices, and you'll have to do the dishes no matter how tired you are or they'll attract bugs. It is a huge new skill for a lot of people. That's not great, but it's true. And if you fuck it up, you could make your family sick. We have learned not to try too hard to be middle-class. It never works out well and always makes you feel worse for having tried and failed yet again. Better not to try. It makes more sense to get food that you know will be palatable and cheap and that keeps well. Junk food is a pleasure that we are allowed to have; why would we give that up? We have very few of them.
The closest Planned Parenthood to me is three hours. That's a lot of money in gas. Lots of women can't afford that, and even if you live near one you probably don't want to be seen coming in and out in a lot of areas. We're aware that we are not "having kids," we're "breeding." We have kids for much the same reasons that I imagine rich people do. Urge to propagate and all. Nobody likes poor people procreating, but they judge abortion even harder.
Convenience food is just that. And we are not allowed many conveniences. Especially since the Patriot Act passed, it's hard to get a bank account. But without one, you spend a lot of time figuring out where to cash a check and get money orders to pay bills. Most motels now have a no-credit-card-no-room policy. I wandered around SF for five hours in the rain once with nearly a thousand dollars on me and could not rent a room even if I gave them a $500 cash deposit and surrendered my cell phone to the desk to hold as surety.
Nobody gives enough thought to depression. You have to understand that we know that we will never not feel tired. We will never feel hopeful. We will never get a vacation. Ever. We know that the very act of being poor guarantees that we will never not be poor. It doesn't give us much reason to improve ourselves. We don't apply for jobs because we know we can't afford to look nice enough to hold them. I would make a super legal secretary, but I've been turned down more than once because I "don't fit the image of the firm," which is a nice way of saying "gtfo, pov." I am good enough to cook the food, hidden away in the kitchen, but my boss won't make me a server because I don't "fit the corporate image." I am not beautiful. I have missing teeth and skin that looks like it will when you live on B12 and coffee and nicotine and no sleep. Beauty is a thing you get when you can afford it, and that's how you get the job that you need in order to be beautiful. There isn't much point trying.
Cooking attracts roaches. Nobody realizes that. I've spent a lot of hours impaling roach bodies and leaving them out on toothpick pikes to discourage others from entering. It doesn't work, but is amusing.
"Free" only exists for rich people. It's great that there's a bowl of condoms at my school, but most poor people will never set foot on a college campus. We don't belong there. There's a clinic? Great! There's still a copay. We're not going. Besides, all they'll tell you at the clinic is that you need to see a specialist, which seriously? Might as well be located on Mars for how accessible it is. "Low-cost" and "sliding scale" sounds like "money you have to spend" to me, and they can't actually help you anyway.
I smoke. It's expensive. It's also the best option. You see, I am always, always exhausted. It's a stimulant. When I am too tired to walk one more step, I can smoke and go for another hour. When I am enraged and beaten down and incapable of accomplishing one more thing, I can smoke and I feel a little better, just for a minute. It is the only relaxation I am allowed. It is not a good decision, but it is the only one that I have access to. It is the only thing I have found that keeps me from collapsing or exploding.
I make a lot of poor financial decisions. None of them matter, in the long term. I will never not be poor, so what does it matter if I don't pay a thing and a half this week instead of just one thing? It's not like the sacrifice will result in improved circumstances; the thing holding me back isn't that I blow five bucks at Wendy's. It's that now that I have proven that I am a Poor Person that is all that I am or ever will be. It is not worth it to me to live a bleak life devoid of small pleasures so that one day I can make a single large purchase. I will never have large pleasures to hold on to. There's a certain pull to live what bits of life you can while there's money in your pocket, because no matter how responsible you are you will be broke in three days anyway. When you never have enough money it ceases to have meaning. I imagine having a lot of it is the same thing.
Poverty is bleak and cuts off your long-term brain. It's why you see people with four different babydaddies instead of one. You grab a bit of connection wherever you can to survive. You have no idea how strong the pull to feel worthwhile is. It's more basic than food. You go to these people who make you feel lovely for an hour that one time, and that's all you get. You're probably not compatible with them for anything long-term, but right this minute they can make you feel powerful and valuable. It does not matter what will happen in a month. Whatever happens in a month is probably going to be just about as indifferent as whatever happened today or last week. None of it matters. We don't plan long-term because if we do we'll just get our hearts broken. It's best not to hope. You just take what you can get as you spot it.
I am not asking for sympathy. I am just trying to explain, on a human level, how it is that people make what look from the outside like awful decisions. This is what our lives are like, and here are our defense mechanisms, and here is why we think differently. It's certainly self-defeating, but it's safer. That's all. I hope it helps make sense of it.
Additions have been made to the update below to reflect the responses received.
UPDATEThe response to this piece is overwhelming. I have had a lot of people ask to use my work. Please do. Share it with the world if you found value in it. Please link back if you can. If you are teaching, I am happy to discuss this with or clarify for you, and you can freely use this piece in your classes. Please do let me know where you teach. You can reach me on Twitter, @killermartinis. I set up an email at killermartinisbook@ gmail as well.
This piece has gone fully viral. People have been asking me to write, and how they can help. After enough people tried to send me paypal money, I set up a gofundme. Find it here. It promptly went insane. I have raised my typical yearly income as of this update. I have no idea what to say except thank you. I am going to speak with some money people who will make sure that I can't fuck this up, and I will use it to do good things with.
I've also set up a blog, which I hope you will find here.
Understand that I wrote this as an example of the thought process that we struggle with. Most of us are clinically depressed, and we do not get therapy and medication and support. We get told to get over it. And we find ways to cope. I am not saying that people live without hope entirely; that is not human nature. But these are the thoughts that are never too far away, that creep up on us every chance they get, that prey on our better judgement when we are tired and stressed and weakened. We maintain a constant vigil against these thoughts, because we are afraid that if we speak them aloud or even articulate them in our heads they will become unmanageably real.
Thank you for reading. I am glad people find value in it. Because I am getting tired of people not reading this and then commenting anyway, I am making a few things clear: not all of this piece is about me. That is why I said that they were observations. And this piece is not all of me: that is why I said that they were random observations rather than complete ones. If you really have to urge me to abort or keep my knees closed or wonder whether I can fax you my citizenship documents or if I really in fact have been poor because I know multisyllabic words, I would like to ask that you read the comments and see whether anyone has made your point in the particular fashion you intend to. It is not that I mind trolls so much, it's that they're getting repetitive and if you have to say nothing I hope you can at least do it in an entertaining fashion.
If, however, you simply are curious about something and actually want to have a conversation, I do not mind repeating myself because those conversations are valuable and not actually repetitive. They tend to be very specific to the asker, and I am happy to shed any light I can. I do not mind honest questions. They are why I wrote this piece.
Thank you all, so much. I don't know what life will look like next week, and for once that's a good thing. And I have you to thank.
This post first appeared on killermartinis.kinja.com
Follow Linda Tirado on Twitter: www.twitter.com/killermartinis

06 November 2013

09 October 2013

Participate in AASPIRE's study, help research, and earn a $30 Amazon gift certificate!

Are you on the autism spectrum?

Be the first to try out a tool that may improve your healthcare

AASPIRE is a partnership between people on the autism spectrum, researchers, healthcare providers, and family members. We have created a healthcare toolkit to try to help people on the autism spectrum get better healthcare. We now want people to try it out in real life.
You are invited to participate if you are an adult on the autism spectrum, live in the U.S., and have a primary care provider or regular doctor. (You may also participate if you are a support person for an adult on the autism spectrum who cannot participate him/herself.) 
We will ask you to try out our online healthcare toolkit.  As part of the study, you can create a personalized accommodations report to help your healthcare providers understand how to better serve you.
You will also have access to a website with information and worksheets about things like
·         how to prepare for appointments,
·         how to communicate better with your provider,
·         how to follow up after a visit, and
·         what your rights are in healthcare.
You will take a 20-minute survey before and after using the toolkit. With your permission, we'll also ask your provider for feedback on the toolkit.
If you take part in the study, you will receive a
$30 Amazon.com gift card or check.
To learn more, go to www.aaspire.org/healthcare. You can also contact Angie at (503)725-9634 or studies@aaspire.org.
OHSU IRB #5580
Principal Investigators:
Christina Nicolaidis, MD, MPH, Oregon Health & Science University
Dora Raymaker, MS, Autistic Self Advocacy Network

06 July 2013

Why the Common Core Is Good for Special Education Students

Want to learn more about the benefits of accessibility and inclusion? Check out this piece on Take Part about inclusion in schools for disabled students! Click here to read the article!

16 May 2013

Vectors of Autism with Laura Nagle

Check out Laura's interview about her film Vectors of Autism on Autism Women's Network (AWN)! Click here to read the interview. And click here to access the Vectors of Autism site. Enjoy!

02 April 2013

Get your fiction on! Breaking the Ice: Cliffs in the Sky, by Meg Evans

The little boy ran through the office, not watching where he was going, his gaze fixed on the bright sunlit mass of late-afternoon clouds shining like great red cliffs in the sky.  He ignored the more mundane view of Baltimore’s streets in December 2003, gridlocked with both rush hour and holiday shopping traffic, and the crowded parking lot six stories below the window.

He could hear his parents behind him, speaking with a large dark-haired man who wore bright shiny eyeglasses.  Their words made no sense to him.  He knew only that he didn’t like his mother’s strained tone and her quick, broken speech, trailing off abruptly to sobs.  Her voice sounded to him like the gusting wind just before a thunderstorm, when the first drops of cold rain came pattering on fallen leaves.

Looking out the window at the bright red clouds, he touched the rocks in his pocket for reassurance.  They sparkled in the sunlight, too.  He always picked the brightest pebbles from the landscaping beds in his front yard when he went outside to play.  Sometimes he gave an especially pretty pebble to his mother, as she stood watching him with her gray thunderstorm eyes.  But no matter what he gave her, it never seemed to put any sunlight into her voice or face.

The man with the shiny eyeglasses was speaking now, his voice flowing smoothly like the stream in the woods behind the boy’s house.  The stream had tiny fish darting around the rocks and insects skittering across the surface.  On the coldest days it froze and was quiet.  If only the shiny-glasses man would be quiet, too.  He just kept on talking, and fragments of his speech registered in the boy’s mind without any meaning attached to them.

“Classic autism… residential programs available…”

The red cliffs in the sky reminded the boy of his favorite video, a nature documentary about cliff-nesting birds.  He wished that he could fly away to those shining cliffs and soar in the open blue sky above them.  Everything would look tiny from up there, like the view from this high window, but even smaller and farther away.

Holding his arms straight out from his sides, he pretended that the sleeves of his gray jacket were his outstretched wings.  They would have feathers shading from soft gray down on his chest to brilliant white at the tips.  He imagined that the air blowing from the register under the window was a strong wind carrying him away from the rocky shore and over a vast unexplored ocean, launching him aloft into the unknown.

22 February 2013

What is it like to be DEAF?

I greatly appreciate what this man has shared in this video. His message is from the heart, and he conveys himself with utmost honesty, passion, and truth. I wish I could explain myself and my experiences as well as he does.

15 February 2013

To a Parent in a Parking Lot, by Meg Evans

Photo credit: JeepersMedia

I met you last weekend when I was leaving a crowded shopping center. Your son, who might have been about ten years old, suddenly did a cartwheel in front of me while I was walking to my car. You took hold of your son’s hand and then glanced toward me and apologized by saying, “He’s retarded, sorry.”

I didn’t say anything to you before you went on your way. No doubt your attention was focused on keeping your son safe, and rightly so. You wouldn’t have wanted a nosy stranger to lecture you on how your son might feel about your choice of words. Indeed, you probably believed that your apology was the best way to protect your son’s feelings, by letting me know that there was a reason for his behavior. I’m sure there must have been many times when ignorant, judgmental people yelled at your son and got him upset. You’re quite right that your son doesn’t deserve to be abused like that by strangers, and I understand that you were trying to help him by making sure I didn’t jump to conclusions about him.

One little sentence -- just three words. It’s easier than getting into a long conversation about the details of your son’s diagnosis. Maybe you feel that random people in a parking lot have no right to expect you to share personal information. As to that, I don’t disagree. Besides, you wouldn’t have had time to get into a conversation about it, even if you wanted to, because you were so busy making sure your son didn’t get run over. I understand that, too.

Your son didn’t look bothered by the language you used to describe him. Maybe you think it’s harmless because he doesn’t understand what it means. Or you’ve decided that even if he understands, it’s what our society is going to call him anyway, so he may as well get used to it. Why sugar-coat the inevitable? If you use the word in everyday conversation, then it may lose its sting and become just another part of the background of your son’s life. To the extent that your assumptions about what your son can expect from our society may be correct, I can’t fault your logic.

And that, I believe, is the crux of the controversy we have seen about neurodiversity in recent years.  It’s not that anyone vehemently objects on principle to the idea of social equality and respect for their children and for others who have developmental disabilities. Rather, it’s that many parents simply can’t fathom how our society could ever get there from here.

If I had said anything to you, in that parking lot, about the possibility that your language might harm your son’s self-esteem and his potential for future accomplishment, you’d probably have told me that I was both rude and clueless. After all, you’ve been working as hard as you can, all these years, to keep your son safe from harm and to teach him the daily living skills he’ll need as an adult in a group home. Nobody has done more for your son than you have, fighting with school officials and insurance company bureaucrats to get whatever scraps of services are available. So far, those services don’t come close to what your son would need to hold a job and live independently. You can’t foresee that situation ever changing for the better. In the wake of the Great Recession, you’re just grateful that there is still a roof over your family’s heads and food on the table.

I didn’t write this article with the expectation of changing your views. Realistically, there is very little chance you might read it. And even if you did, I suppose you’d just tell me to quit being the language police, when you have more serious things to worry about. I’m not inclined to dispute that point, in light of all the struggle and stress faced by today’s families. So I’ll ask no more of you than that, if you should happen to come across this article, I hope you’ll take it as it’s intended -- not as a criticism of your approach to raising your son, but as a respectful observation that our world sometimes changes in ways not foreseen.


I have always believed in the power of stories to shape the future.  In that spirit, I’ve composed a vignette describing another parking lot encounter, which takes place in the year 2025. This time it’s a little girl at the shopping center with her mother. Nine years old, with a freckled face and long blonde pigtails, she smiles often but can speak only a few words. She dearly loves both gymnastics and playing outdoors. It’s a beautiful sunny afternoon, with a cool breeze blowing and a few tiny puffy clouds dancing across the brilliant autumn sky. Overcome by the keen joy of the moment, the little girl spontaneously does a handspring right there in the parking lot. She doesn’t notice how close she comes to colliding with a passing shopper, a middle-aged lady who blinks in surprise behind her bifocals.

The child’s mother takes her hand and is about to apologize. Before Mom has time to say anything, however, the lady smiles at the little girl and compliments her for doing such a good handspring.  Then she turns to the mother and says, “What a lovely daughter you have!”

Mom says thank you for the kind words and continues walking to her car with her daughter. Once safely buckled in, the little girl starts typing busily away on a tablet that has a text-to-speech app installed. Her spelling and vocabulary are still very much a work in progress, and often she gets a word wrong; but today has been such a good day that she doesn’t feel frustrated because of it.

All the way home, the back seat overflows with happy, electronically-generated chatter. As best Mom can figure it out, it’s about gymnastics, and the cute puppy in the pet shop window, and gymnastics, and the nice lady in the parking lot, and gymnastics, and last week’s field trip to the nature preserve -- and of course, gymnastics. Mom responds with an occasional “Wow!” and “That’s great!” when she can get a word in.

Truth be told, Mom isn’t paying as much attention as her daughter believes she is. Her thoughts are still on a news article she read earlier that day. For the first time since records have been kept, most adults with developmental disabilities have jobs and are living independently. The government official who was interviewed for the article gave many reasons -- advances in assistive technology, improved educational methods and therapies, better availability of health care, expanded community services and supports, a booming economy with many new jobs to fill, and diversity programs aimed at countering prejudice and hiring more workers with disabilities.  But above all, the official said, it was because our society finally found the collective will to do what was needed.

She has been quiet too long, her thoughts filled with the myriad possibilities that the future may hold. Her daughter just turned up the volume on the tablet (having discovered the uses of that feature last month) and “MOM!” blares from the back seat.

“Yes, I’m listening,” she says. The light changes to green, and she accelerates away from the intersection. Tall maple trees on both sides of the boulevard are ablaze with late-fall colors. Some of the trees have dropped almost all of their leaves; these stand in clear silhouette against a backdrop of pure blue sky, with the shape of every branch and twig revealed.

She speaks again, as much to herself as to her daughter.  “The world is listening too.”