When I Grow Up: A Social Security Story

When I grow up
I will be tall enough to reach the branches
that I need to reach to climb the trees
you get to climb when you’re grown up.

And when I grow up
I will be smart enough to answer all
the questions that you need to know
the answers to before you’re grown up.

And when I grow up
I will eat sweets every day
on the way to work and I
will go to bed late every night!

And I will wake up
when the sun comes up and I
will watch cartoons until my eyes go square

and I won’t care ’cause I’ll be all grown up!
When I grow up!
When I grow up, when I grow up
(When I grow up)
I will be strong enough to carry all
the heavy things you have to haul
around with you when you’re a grown-up!
And when I grow up, when I grow up
(When I grow up)
I will be brave enough to fight the creatures
that you have to fight beneath the bed
each night to be a grown-up!
And when I grow up
(When I grow up)
I will have treats every day.
And I’ll play with things that mum pretends
that mums don’t think are fun.
And I will wake up
when the sun comes up and I
will spend all day just lying in the sun
and I won’t burn ’cause I’ll be all grown-up!
When I grow up!

 

If you ask a small child what they want to be when they grow up, once they’ve gotten past the stage of wanting to be a cat or a dog, they will inevitably answer ‘a firefighter’ ‘a doctor’ ‘a truck driver’ ‘a princess’ or something along those lines.  As they get older, their dreams become more distinct, more realistic: ‘a marine biologist’ ‘a veterinarian’ ‘a lawyer’ ‘an artist’ ‘an elementary school teacher.’

I could ask a thousand children this question and although I might get a few confused looks, a few ‘I don’t knows’ and, inevitably, a few kids still convinced that they could grow up to be a fairy or cat, not one of them will ever say, ‘I want to be disabled’ because, well, being disabled isn’t a thing to be.  Even school age children know that in order to be a ‘real’ adult, you have to work and bring home a paycheck.  You have to support yourself.  That is, after all, the whole point of growing up: to become a contributing member of society.

When I was four or five, I wanted to be a doctor.  Then I found out how much school they needed and nope, off the table.  When I was in high school, I was determined to be a middle-school social studies teacher.  In college, I took all the right courses to become one, only to fail utterly at my internships because it turns out that passion for a subject couldn’t make up for the fact that my social skills were not up to being a teacher.  Around this time, as my identity as a disabled person came into being, I tried another internship at a disability rights organization.  I loved it.  I thought ‘I found my people!’ and knew right then that I was going to be a disability rights activist.

Which, over a dozen years later, it turns out that I am.  Too bad it never occurred to me that I couldn’t make a living doing it.

I remember, very clearly, being told that I needed to save money as a teenager, and that I needed to protect my savings, because by the time I was an adult, social security wasn’t going to be around.  They would run out of money, and I would need to support myself in my old age.  It didn’t occur to anyone then that I would possibly need social security before then.  After all, I was a bright, ambitious person with great references and internships behind me – who wouldn’t want to hire me?

As it turns out………every single place I’ve ever applied to.

I’ve said it before and I will say it again. The fact is that the majority of hiring decisions are made within the first few minutes of meeting someone based on their nonverbal cues and charisma. (https://theundercoverrecruiter.com/infographic-how-interviewers-know-when-hire-you-90-seconds/) I don’t have that.  Knowledge, yes.  Skills, yes.  Ability to care, yes.  Executive functioning……I can work around.  But charisma?  That is a shibboleth that I cannot manifest.

And so it was that last spring I started to apply for social security. Even then, I thought that it wouldn’t be for the long-term.  I had heard of several jobs in the area that I was sure I’d be perfect for.  As I did (okay, let’s be honest here, my mom did 99% of it) the paperwork, I thought, well, it will be nice to have for a few months to tide me over, but I’m sure that this job or that one will work out.  It really sounds perfect for me.  I really could do this.

But I couldn’t.  I didn’t qualify for my dream jobs.  I did qualify for social security. 

Not a lot, and the details of it I will keep private, but it is enough to live on if I’m very, very careful.  Which I am, because if nothing else, this process has taught me that you cannot be too careful.  You cannot be too cautious.  Hopes and dreams are fragile things, easily broken by a sudden gust of wind.  The problem is that when you’ve assumed for over thirty years that you would grow up to be a contributing, working member of society and now you find out that……..well………you won’t be, the realization cracks you like a piece of glass hit by a hammer. I grew up with the American idea of work hard, and you’ll get to where you want to be.  People who don’t work are lazy, they are drains on society.  The pain as I confront the reality of having to accept social security feels like shards of grass embedding themselves in my soul and heart.

I’m lazy. I’m useless.  I’m stupid.  I’m lazy.  The mantra repeats, over and over, again and again.  All of my worst dreams are coming true, even as another part of me feels genuine relief that I don’t have to worry about rent or food this month. If you had tried harder, you could have done it.  I know this isn’t true.  I know that I truly tried as hard as I possibly could.  This does not shut up the voices in my brain.

For all that I broadcast about disability acceptance, autistic strengths, nothing to be ashamed of – I am ashamed.  I am ashamed that I couldn’t make it in the ‘real world’ and ashamed that I may never be able to. 

“What would have happened if you’d gotten that dream job?”  my mom asked me recently.

“I would have burned out within weeks,” I admitted.

“Yes.  That’s what I think, too,” she said.

I got social security on my first try.  This is unusual.  Part of it, I know, is that my doctors knew what to write on the forms, but part of it is the part that I’m having that most trouble wrapping my mind around.  Yes, I’m that disabled.  Yes, I’m that impaired.  No, I cannot work full time – not now, probably not ever.

The United States government, after all, for all the talk of welfare and disability fraud, doesn’t actually make it easy to qualify as a disabled person.  There are dozens of forms to fill out, reports to be made, every IEP and therapist visit you ever had must be documented.  Luckily, my mother is an extraordinarily organized person so was able to find all of these documents with ease, dating back to when I was three and a half and the forms were mimeographed in purple ink (shoutout to whoever can still remember that smell.)  Still, my mind keeps coming back to the fact that, all along, I was actually more disabled than I ever thought I was.

Because the government doesn’t give out social security to people who are a little bit awkward or who have a little bit of trouble learning.  It gives it out to people who annoy others so badly that they ruin funerals and weddings.  It gives social security to those who have meltdowns, long, horrible, hours-long meltdowns, over the social security office running late with its appointments.  It gives it to people who cannot stop self-harming, who take enough psychiatric medication to knock out a horse, who cannot make back and forth conversation without help, who cannot organize themselves or fill out forms or budget on their own.  Who have no real understanding of the stock market despite having a graduate degree.  Who go to one meeting and are exhausted for the day. It gives it……..to people……..like me.

I feel the desperate need to make it clear here that I don’t want social security.  I don’t want to take away resources from other, more deserving people.  But there exists right now within me so many dichotomies, so many factions, I feel as if I am at war: I don’t want it, but I do need it.  I don’t think others should be ashamed of getting it, yet I am ashamed.  I don’t think that a person’s self-worth should be tied to their ability to contribute monetarily to the economy, yet mine is.  My ideals and principles are sound.  My feelings are another matter entirely.

Little kids know what adults do all day: they get up, they go to work, they come home.  Recently someone asked what I did all day.  I explained, and they said that ‘oh, so you basically do what everybody else fits in on the weekends and after work.’  I felt ashamed then.  I felt worthless.  Is my life just made up of hobbies, then?  Am I so slow that it takes me all day to do what others do a in a few hours?

I tell other people constantly that there is nothing wrong with being disabled, that self-worth should not be tied to your ability to produce.  That the American ‘dream’ has been directly damaging to disabled people by making us equate our self-worth with how much money we earn.  That disability and autism are not a tragedy.  I tell the parents of autistic kids to not despair, that their kids will be fine.  I tell and I tell and I tell, and sometimes, some days, some days like today, it feels as if I am telling a lie.

Because the truth is, that I don’t know if I will be fine or not.  I don’t know if the world will end tomorrow in the haze of an atomic bomb, but I am increasingly worried, increasingly certain, that it will.  Which begs the question, then, what is the point of doing anything?  Why should I try anything if we are all going to die tomorrow? How do I stand with my principles while at the same time making connections that I need with people who go against those principles?  How do I even attempt to look for paid opportunities when all my non-paid work fills up my days and nights?  How do I improve my physical health when staying on top of my mental health? 

I have too many questions and not enough answers.  I spend too much time reading and not enough time doing.  When people criticize me, I am quick to agree, but when people praise me I think that they’re being ridiculous because if they knew the real me, they would hate me, too.

A child was dedicated at my church recently.  The parents were asked for their hopes and dreams for their child.  Among other things (including that he would acknowledge his own place of privilege, which was cool) they wanted the baby to grow up to have satisfying work and good mental and physical health.  Their dreams, the dreams of any parent, didn’t include a disabled child.  Nobody grows up to think, oh, I want to be disabled.

“Just because you don’t get paid for it,” a friend reminds me, “doesn’t meant that you don’t work.”

This is true.  I do work.  I write, I volunteer, I research.  I’m trying right now to establish the history of slavery within my church and finding that it’s a much bigger project than I thought it was.  (I knew there were enslaved people buried in our graveyard, I didn’t know who they were.  It turns out that various historical societies have very different views on who they are and all are certain they are right.)

I bake, I read, I show up, I sing.  I take comfort in music and musicals, rituals and rain. 

I remind myself that I may be grown, but I will never stop growing, and I will never stop fighting, either.

 

When I grow up

I will be brave enough to fight the creatures

that you have to fight beneath the bed

each night to be a grownup
Just because you find that life’s not fair, it
doesn’t mean that you just have to grin and bear it.
If you always take it on the chin and wear it
nothing will change!
Just because I find myself in this story,
It doesn’t mean that everything is written for me.
If I think the ending is fixed already,
I might as well be saying
I think that it’s OK!
And that’s not right!
And if its not right!
I’ve got to put it right!

 

(lyrics by Tim Minchin from Matilda the Musical, song: When I Grow Up)

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Congratulations! A Letter to Parents of Newly-Diagnosed Autistic Children

Someone who used to go to church with me recently contacted me because her son has been diagnosed as being autistic.  She asked what she should do.  Don’t do ABA! I said, and, I’ll get back to you later with more.  Well, it’s later, and, as it turns out, I have quite a bit more to say…….

Dear Lucy,

Congratulations!

You have a beautiful, bright child with unlimited potential.  And despite what doctors may or may not have told you when they told you his recent diagnosis, this fact will remain the same until Peter turns 18, at which point he will be a bright, beautiful adult with unlimited potential.

Also: welcome!

Welcome to the autism club.  It’s not a club that any neuro-typical parents ever want to be in, and many will denigrate.  They will say that you don’t want autism in your life, that it’s a burden, it’s too hard, they are tired of fighting, they are tired of their child’s behaviors.

So I’m asking you, firstly, to stop listening to parents.  With few exceptions (squidalicious, diaryofamom) they will not paint a very positive view and they will undoubtedly exhaust and overwhelm you.

Seriously.  At this point in your life, other parents of autistic kids have nothing to offer you.  They don’t know Peter, they only know their own child.   

Listen instead to autistic adults. We are the ones who have been there.  We are the ones who have years of experience in every kind of therapy imaginable and who can tell you, long-term, what worked and what didn’t.

Oh, and you’ve probably noticed this by now, but Peter doesn’t have autism.  He’s autistic.  The same way that you don’t have whiteness, you’re white.  It’s called identity-first language and is preferred by the vast majority of autistic adults. Google it to find out more.  (In future in this letter this will be abbreviated to GITFOM.)

Secondly, start listening, and learning, from Peter.  He may not communicate in a typical way, but he will still manage to tell you what is really important.

Be prepared that your life will be lived at a slightly different pace than before.  It will be slower, more meandering.  It will take you longer to get places and longer to leave.  It will also be a deeper, richer journey, and you will start noticing wonderful things about the world that you never knew before.  Peter’s interests will lead you to sections of the library and internet and quite possibly the planet that you had no idea existed. 

What are his interests, by the way? I’d really like to know, because his joy in his interests will be like an exploding star, so wondrous, so bright that it overwhelms you, and it overwhelms him, too.  He may start to flap or run around in circles.  That is called stimming, or self-stimulatory behavior.  The doctors may tell you that that’s not good, that you should discourage it.  That’s utter and total nonsense.  Stimming is a physical manifestation of emotions which are too big for the body to contain.  It can indicate sadness just as much as happiness. 

Let Peter delve into his interests. Do not limit him in how much time he spends on them.  Relate other areas of your life to them.  Let him decorate his room and parts of your house with relevant materials.  Buy him gifts related to his interests.  Treat them as seriously as you’d treat the thesis subject of a doctoral student, because to him, they are.  

His interests may change over the years.  Some may fade out and disappear, some may fade and remain as hobbies or things that make him just plain happy, not joyous.  Expose him to as many things as you can, as many experiences as he can handle.  Let him know that the world exists for him to explore, and share his joy in acquiring new knowledge and in sharing it.

Thirdly, spend as much time outdoors as humanly possible.  The outdoors is the natural environment for autistic people.  We thrive in woods, seashores, meadows, deserts, and mountains.  The loud electricity that surrounds us in the city, the busyness, the constant hurrying, does not suit our pace.  We take deliberate steps and look before we place each foot.  Nature is its own reward.  Spending time in nature will calm him down and tire him out.  Simple exploration of wooded areas, with no toys or props other than what you find, should be done for at least a few hours a week.  If possible, put up a tent or fort in your yard, let it grow a bit wild with the trees, and let him be free.  In touching sand, mud, rocks, and gravel, in building with sticks and string, in drawing patterns in the sand, in picking flowers and leaves, he will get occupational therapy.  In stomping through different textures of ground, in splashing in puddles, swimming in oceans and ponds, climbing and swinging from trees and jumping from one spot to the next he will get occupational therapy.  Walk on the earth, not on pavement. Go barefoot if it’s safe. When you feel he can be trusted with one, give him a sturdy kid camera if he wants it and encourage him to photograph whatever catches his eye.  It will be another window into his world for you.

Teach him to swim, if he can’t swim already.  Autistic people are drawn to water in general and you live near a river.  He must learn to swim, and swim well, as soon as possible for his own safety.  Teach him water safety, that the river is dirty and polluted (because it is, let’s be real here) and to stay away from it.  But give him opportunities to immerse himself in baths and pools and safe water sources as much as possible.  Push to get swimming added to his IEP as a physical therapy goal.  It is a very frightening fact that autistic children are more likely to drown than neurotypical children, GITFOM.

Teach him that he is different, (although there is no doubt that he already knows) and his difference is called autism in the same way that your difference is called blindness.  Expose him to autistic adults and autistic culture.  Treat accommodations as a matter of basic human decency.  Learn about disability culture and history, and add it as just another kind of justice, like justice for LGBT people or African-Americans or undocumented immigrants. Teach him that his difference may make some things harder, but it will make other things easier, and that together, you will always be able to find a way.

Let Peter excel.  Autistic people have common strengths, like our memories, our ability to express ourselves unconventionally, the way we can hear things others can’t, feel things others can’t.  Figure out how he learns best, visually or verbally.  Learn that he may not express emotions the way that you expect him to, but that doesn’t mean that the emotions are not there.  He simply shows his empathy in different ways.  Don’t ever, ever let anyone tell you that autistic people do not feel like neuro-typical people do, or that Peter *must* be forced to do this or he will never do it on his own.  That is pure nonsense.  Peter will do what Peter will do when Peter is ready to do it.

Unless a legitimate medical doctor truly thinks there is a reason for it, don’t bother with quack cures or cutting out gluten or dairy or any of the other ridiculous, expensive cures that charlatans will try to sell you.  Peter is already perfect.  He doesn’t need to be cured, he just needs, like every other child, to be loved.

However, be aware that autism does affect the entire body.  Peter may be under or over responsive to sensory stimuli.  He may not feel hot, cold, or pain, or over-feel them, or not respond to them.  His diet may be limited due to sensory processing disorder and his gut may be messed up.  Do get as much fiber and nutrients as possible into him, and if you think he’s backed up, miralax has the world miracle in it for a reason.  GITFOM, or ask your doctor. 

I’ve yet to meet an autistic person who is not an artist in some way, be it in writing, painting, minecraft building, legos, or clay.  Expose him to every type of art there is and then some.  Make every kind of playdough you find on the internet until you find your favorite (except the marshmallow one, that one is a total disaster.)  Incorporate different textures, sounds, and scents into art as well as visuals.  Make music every day.  Sing.  Singing is a great, great way to teach autistic kids prosody and get them to have more fluent speech.

Peter will probably be clumsier than other kids.  The physical act of writing will take him longer to learn.  Do teach him, but also give him access to a keyboard so he can express himself in words without having to expend the enormous effort that physical writing takes.  Be aware that autistic people have a remarkable capacity for unintentional self-injury in ridiculous ways, but also, if you see any bruises that you can’t explain, find out where they came from.  Children with disabilities are more likely to be abused than their nondisabled counterparts.  Make it clear to his teachers and caregivers that you expect an explanation for every single mark that you see on him.

Teach him about his body.  Teach him to trust it.  That evolution made him who he is and that’s a wonderful thing.  Talk to a preschool OWL (Our Whole Lives, GITFOM) teacher for resources. Get him to know his body and that it is HIS, his alone.  Teach him to say no, early and often.  Respect his no.  Tell his teachers to respect his no.  This is a crucial, crucial lesson in preventing sexual abuse, which is all too common for people with developmental disabilities.  I didn’t know that I could say no as a kid, and ABA programs teach compliance, not bodily autonomy.  If he wants hand-over-hand help, that’s fine.  But if he wants to struggle for months to tie his shoes, let him – or buy him Velcro ones. 

Unless it is a matter of physical health or safety of him or another person, for example, vaccinations at a doctor’s office or preventing him from running into the river, nobody should be touching him without his consent.  This includes relatives who want a hug or a kiss.  Peter doesn’t owe them anything.  When you let him choose who to interact with, you are telling him that he is a person worthy of respect, and that you will listen and respect him.  On the other hand, if he gets violent towards you or is playing too rough with anyone, do not hesitate to remove yourself from the situation and explain why.

Your doctor may have said that Peter isn’t hitting certain milestones.  This is probably true, but it’s also true that he will almost certainly hit them years later.  Many neuro-typical kids go through a ‘why’ phase at three or four.  Many autistic kids do it as tweens or teenagers.  It isn’t a matter of going through the alphabet in the wrong order, though – it’s a matter of it being a different alphabet altogether.

The only absolutely necessary therapies are 1, whatever teaches him to swim and 2, communication/speech therapy.  Get him an evaluation for an alternative communication device if he seems to be frustrated with his communication skills – see www.niederfamily.blogspot.com for more, best site ever on the importance of alternative/augmentative communication, or AAC.  When he communicates more, he will be able to tell you what he needs, what he likes and doesn’t like.  Autistic people do *not* learn things if we are miserable but we *do* love to learn.  Your goal in all therapy should be making sure that Peter is happy and learning.  It doesn’t necessarily matter what he is learning. 

Push self-help skills.  Don’t do everything for him, or he will go through life like an entitled prince.  Show him how everyone in the family works at whatever they do, and he has to work to take care of himself like everyone else does.  It is much, much easier and faster if you just bathe him and dress him every day, but if you do that you’ll wake up to a teenager who still needs your help in the bath.  Charts are very helpful here.  Put your chores alongside his.  If he shows interest in earning things, you can offer incentives like, a new matchbox car if he brushes his teeth by himself for a week.  (He will need reminders, of course, until he leaves home, but this applies to every child.) 

I’m not going to lie.  Autism sucks sometimes.  It is hard sometimes.  But I won’t warn you about all that stuff because, quite frankly, you’re probably dealing with enough right now. Join the FB group ‘parenting autistic children with love and acceptance’ and if you can’t figure out how to help him through the hard times, ask autistic adults.  We almost always have answers that you haven’t thought of.  For example, many autistics get upset or anxious right before a big storm.  This is because we can feel the dropping and rising of the air pressure and it is really painful.

Be aware that Peter will have some disadvantages due to his autism, but he’s also a white male in American society so he’s already got a huge leg up on the majority of the world.  Do emphasize, early, the importance of looking neat, because, awful as it is, oftentimes people will overlook or excuse the odd behavior of people if they are dressed and groomed nicely.  Of course, don’t torture him with haircuts, let him wear whatever (clean, fitting) clothes he wants, and get all unscented soaps, lotions, etc. 

Don’t push Peter to be like his NT peers, because he won’t be.  He will only ever be like himself.  The chances are high, however, that as he grows older his best friends will be other ‘quirky’ kids, which is why it is important that he knows of his autistic identity early on.  The problem with schools is that they put all the kids together and expect them to naturally form friendships.  That will probably not happen with Peter.  You will need to seek out the parents of other oddballs and arrange playdates.  If there’s another kid who shares his common interests, great.  Don’t just limit him to school friends, though.  Autistic people are really great at intergenerational relationships.  Bring him along to many different intergenerational events and you’ll likely find he connects best with those much older or much younger than him.  That’s fine.  I have friends who are teenagers and friends in their seventies.  It doesn’t matter how old or young a person’s body is as long as their soul is warm and welcoming, and autistic people have a remarkable ability to find fellow members of our tribe.  Remember that a playdate consisting of two kids each on a separate ipad is still a great playdate. 

You are undoubtedly overwhelmed and anxious now.  Somebody has probably said to put Peter in 40-plus hours of ABA (DON’T DO THAT!), or on a special diet, and somebody has probably sent you a stupid poem about Holland which is ridiculous because people are people, not countries.  But you’ve raised Peter for – I actually have no idea how old he is, four or five? – years already and he’s fine.  He will continue to be fine, and so will you.  Just remember:

  1. Listen to him.
  2. Listen to autistic adults.
  3. Don’t abuse him. (see #2.)

 

You’ve got this. 

All the best,

 

Ekie

Not Over It. Not Ever.

It was nearly a month ago now.

A month ago since that night when I was told that I was not fit to be a friend, and that said friend would not allow me to be around them or their son.  A month ago since I cried until I was retching, texted frantic apologies to everyone I knew for existing, seriously contemplated turning myself into the police, hurt myself until I bruised and bled and finally doubled my emergency anxiety medication so I didn’t end up in the hospital.

A month ago.  So short, yet so long ago.

“Are you over it?” a friend asks.

What a stupid question.  What a simple question.  It happened, it is past, it is over.  I should be over it, this I know. I have talked it over with Naia-the-new-therapist, I have talked it over with friends, with my mother.  I have deleted all evidence of our nine-year relationship, thrown out the pictures, the invitations, erased their presence from my social media.  I have scrubbed myself clean, realized that I did not commit any crimes, only a slightly-more-awful-than-usual social gaffe, and have allowed myself to be have conversations with children again.

But am I over it?  No.  I am not.  And I probably never will be.

I am still trying to tell people what happened.  I am still unable to do so without crying.  I belong to a religion that does not believe in sin, yet I cannot help going over and over and over my behavior, berating myself, physically beating myself for a crime that I honestly did not know I was committing at the time.  Sometimes I think that this is why Catholics have kept up the tradition of confession.  Five minutes in a booth, ten minutes on your knees at the altar, and whoosh, your slate is wiped clean, your soul is unsullied, washed over like the cold ocean tide coming in to erase any evidence of footprints.

My autistic brain replays the day and the deed over and over.  What could I have done differently?  What should I have done?  What should I have known?  Was it a mistake to reach out in friendship at all?  If I had only stayed in my house that day then nothing would have happened.  How stupid am I – stupid, stupid, stupid – to believe that I can be around people and not hurt them?  I obviously did hurt them.  I hurt people.  I should be in jail.  Isn’t that where people who hurt others go?

“You didn’t hurt them,” Naia says, over and over and over.  “You offended them.  There is a difference.”

I know, intellectually, that she is right. I threw no knives, I fired no gun, I crashed no car.  Yet my behavior and my words hurt them, much as their behavior and their words hurt me.  I think that I must deserve this.  I think that I must punish myself.  Maybe if I punish myself enough, then I will not make the same mistake in the future?  Maybe if I give myself one more scar, I will remember to just shut up?  Maybe if I just do this, try that, try harder, then my social mistakes will be over and I will stop offending and alienating people.

But I cannot try harder than I am trying now.  I cannot try harder than I tried on that day.  And I cannot forget, or get over, what happened for a long, long time.

Thirty years ago I interrupted a teacher in preschool and was sent to a time out in the hall.  The hall was long, dark and scary.  I sat and I cried and I cried.  The teacher’s name was Susan.  She knew that all preschoolers cried when they got in trouble.  She didn’t know that I still haven’t forgiven myself for interrupting her three decades later.

Fourth grade – being late to school.  Sixth grade – a flippant remark.  Eighth grade – offending someone.  Each of these incidents is scarred in my brain.  They are wired just as firmly as the titanium rod that holds my friend Penny’s spine together.  They will not go away.

Each is a reminder that I cannot trust myself, and I cannot trust other people.  Yet it sets off a war inside myself, for I am naturally trusting, naturally friendly.  It is only the fact that I’m terrified of hurting others that people ever think I am reserved or shy.  The only reason I stutter sometimes isn’t because I can’t find the words, but because I am afraid that the words will be the wrong ones.  That these words will lose me, again, friends and relationships that I value.

I love deeply and fiercely.  I hug people so hard that they hurt.  I try to keep in touch with people, to show them that they are valuable to me.  Because of my disability, I require more help than most people.  I am always conscious of this, always looking for ways that I can be less of a burden, more of a help.  I bake, I drive, I do what I can.  But sometimes it feels like I live my life as an apology for existing.  I want to live an authentic, autistic, enthusiastic life, yet it has been ground into me from before I could talk that my way of existing is not how other people exist.  That most of the time, I am wrong.  That most of the time, I should just. Shut. Up.

Which really……isn’t…….me…….at ………all.

I cannot live and be happy and be quiet all the time.  I love to talk, love to connect, love to give speeches and presentations and answer questions and help people to understand things.  I love to learn, my logical brain seeking an answer to everything.  I love to laugh, and pet dogs, and snuggle babies.  I love to advocate and hike and do crafts and sing.  It’s taken me over three decades but I have finally decided that most of the time, I do love living.

But no life comes without pain.  And my life, it seems, is sometimes cursed because it is precisely in doing what I love most – connecting with people – that I occasionally hurt them.  I meet strangers and they are speaking Serbian and I am speaking Hindi but neither of us notice and so I stick to my Hindi cultural mores and express things in my Hindi way and I don’t know that I’ve just called them a nasty word in Serbian, because to me the word means something completely different.  I was talking about panthers and they were talking about ducks.  We were in the same theater but watching completely different plays.  Only the characters all look the same to me, so how was I supposed to know?  How do I generalize a life’s worth of social skills training, formal and informal, so that I stop making mistakes?  I can’t.  I can either give up on living completely or accept that sometimes, I will hurt people.  At some time, I will probably hurt you.

And sometimes if I’m lucky, sometimes people will give me the chance to explain. Years ago at a beach house, my friend Lizzie was walking around in her bikini all day.  I kept imploring her to change into clothes.  After a few hours of this, she took me aside.  She wanted to know if I was offended by how she looked in her bikini.  What?  I was aghast.  No!  I was concerned, because she had been swimming, and my doctor had recently told me that you could get a nasty infection from staying in your wet bathing suit after swimming.  I didn’t want her to get sick.  I took my doctor’s words as law.  I had absolutely no opinion of how she looked, only that she stayed healthy.  Oh, Lizzie said.  I won’t get sick.  You can stop worrying.  But it was nice of you to be concerned about me.  She could forgive me for my comments.  She could give me a chance to explain.

Unfortunately, many times,  people will not give me a chance to explain.  Another friend at church was on the committee that asked members to be on various committees.  I ventured to him that I might volunteer for X.  He explained that he would never nominate me for any committee because I had made too many social errors, that people didn’t always like me, that I sometimes said the wrong thing.  I accepted this, and thought it over.  I thought, this is true.  He is right.  I don’t want to make any trouble.  I don’t want to cause people to have to work more because, after all, understanding and communicating with me does take some work sometimes. Since he said that, years ago, I have never volunteered for a single committee no matter how many times people have asked the general congregation to do so.  I have done single tasks alone but that is all.  I am still, to this day, too afraid to be a part of my church fully because of this one person’s words.

This fall, I was seriously considering venturing out of my shell more.  Now that I’ve qualified for social security (long story some other time) I have more free time.  I thought about being on a committee or two.  My brain, always slow to process human interaction, thought that perhaps I had something to offer, that perhaps that friend didn’t know me that well, that perhaps I could contribute something of value. And then a message came from someone that I loved, whose son I loved.  A message telling me that I am not only unworthy of their respect, but that I am unsafe, evil, all the bad things that ever existed in the world.

Then the tears, and the blood, and the pain that seems to radiate from my fecked-up brain and body.

It has only been a month.

No, I am not over it yet.

It will impact my behavior and thoughts for years to come.  It will be the niggling seed of doubt long after this friend has forgotten what exactly I did.  I will never forget.  I will never stop replaying that scene.  Some people’s memories change over time.  Mine don’t.  In my memories, I am always in the wrong, and I am always deserving of people’s wrath.  It’s another neural pathway cementing my PTSD, it’s another thing that I cannot forgive myself for.  Definitely not now, maybe not ever.

I’m not okay.  I never was, I never will be.  So if I don’t seem to relax around you, if I seem tense or unhappy, it is not due to you, it is due to me.  Long experience has shown me that I cannot trust people because sooner or later, I will hurt them, I will hurt you, and that is truly the very last thing I ever want to do.

If the road to forgiveness starts with myself, then that is a path I doubt I will ever set eyes, much less walk, upon.

 

 

 

 

Abilities Expo Review

Have you ever heard of the Abilities Expo?  Have you ever wanted to go to one?

Abilities Expo ™ bills itself as ‘Inspirational, Unforgettable and Coming Your Way.’ It goes on to explain that ‘Abilities Expo is about bringing necessary products and services together under one roof for the community of people with disabilities, their families, caregivers, seniors, and healthcare professionals.  It’s about introducing opportunities that can enrich your life….especially ones that you never knew were out there.’  Abilities Expo happens all over the United States in places such as LA, Chicago, DC, Houston, and Boston, as well as in Toronto, Canada.  It has been going on for nearly 40 years, and, granted, I was not alive 40 years ago, but I am alive now and it was being held in my city so I went down to check it out.  After all, it said ‘disabilities’, and I’m disabled, and I’m a member of the disability community.  Therefore, Abilities Expo should be for me……right?

As it turns out, not so much.

Abilities Expo, I have learned in this and in the past few years, is not actually for everyone in the disability community.  It is for a very small subset of the disability community: white wheelchair users with money.  (I say white because, despite the diversity of my city and the disability community, I saw very few POC there, and very few POC in their printed advertised materials.) Although I am white, I am not a wheelchair user and like most people with disabilities, I live below the poverty line.

However, it should be noted here, Abilities Expo is free.  FREE!  Hey, can’t pass that up.  All you had to do was register, answer some mildly-invasive personal questions (what is your disability? Gender? Age?) and get a plastic bracelet slapped on you before you entered. Although I did pre-register, I hate those bracelets – I always tear them to bits in hospitals – the line was long to check in and I didn’t feel like waiting and so my friend, Rae, and I bypassed the registration and just walked in – and found that nobody was checking the stupid bracelets anyway.

We walked down the first aisle, which had non profits on it.   There were not nearly as many in previous years, and those that were there were places with significant endowments.  Although I was unable to find out the rate to rent a booth from their website, a friend who used to exhibit there has told me that the cost, even for non-profits, is incredibly expensive, and you cannot possibly have the simplest exhibit for the three days for under $1000 dollars.  Considering that they charge for things such as trash baskets and each individual folding chair, I am not surprised.  So the real grass-roots organizations run by actual disabled people are not represented.  This is very sad, as it is these organizations which are the heart of the disability community and deserve to be treated as such.

One thing that I always dislike is a hard sell.  If I am going to spend money I am going to spend it wisely.  I plan out my purchases, do research and always see if I can buy used first.  Like the vast majority of PWD, I live on an extremely limited income.  However, you would not know this by going to the Expo! In fact, their exhibitor webpage proudly touts the fact that the aggregate income of PWD in the US is over $1 trillion.  That is a number so big I literally cannot conceive of it.  However, I’m a great browser, and I was happy to browse some things and dream, until the sales pitches began to get more and more aggressive.  At least twice, I had to flat-out tell people, “I live on a very limited income and this product is nice but there is no way I will ever possibly be able to afford it.”  You would think that a company dealing with disabled people would know this?  Apparently not.

One thing I did like was what I call the trick-or-treating aspect.  You are given a reusable bag and you – okay, I – go around to all the booths with candy and get a piece.  It’s exactly like trick or treating!  The bonus is that if you forgot a snack and can’t pay for the overpriced junk at the concession stand, you can have candy instead.  Luckily, I’ve been to the Expo before so came prepared with water and snacks.

The water is important, because unless you are a wheelchair user there are not that many places to sit.  Since the booths have to pay to rent each individual chair, there are few chairs available among the exhibitor booths and if you want to talk to an exhibitor you have to stand there.  My back was aching before we had gone all the way through.  There is a large area with tables and chairs as well as a sort of staging area, but these were removed from the space with the booths. 

One thing that made me sad as a non-wheelchair user was that there were various workshops and events going on throughout the day, but few of them applied to me. The main events included wheelchair skateboarding, wheelchair dancing, and power soccer.  Although I appreciate that they were trying to showcase that people in wheelchairs can do physical activities and sports, it did ring faintly of the idea of the super-crip, the superhero who happens to use a wheelchair but who doesn’t let that stop him from doing anything.  I know many people who use wheelchairs and the fact is, sometimes they do stop you from doing things, just as my autism stops me from doing things.  I dislike the idea that a quiet, sedentary life cannot be equally as fulfilling as one where people do flips and tricks in customized, flashy sports chairs.

The workshops, no matter their subject matter, were all inaccessible to me.  This is because they took place in a roped-off corner of the enormous exhibition hall, and despite the fact that they had CART, you were essentially still surrounded by the Expo.  I honestly do not know how people paid attention to the slides and voices of the presenters when there was so much going on around them.  Maybe you had to be really, really interested in the subject?  All I know is that I wasn’t.  The workshops on the day I went included things about wheelchair travel, horse therapy, and a new kind of physical therapy.  On other days, medical marijuana, emergency preparedness for people with disabilities, and sleep issues were discussed.  A number of the workshops were put on by people who wanted you to buy their product, service or therapy, although, since I did not actually go to any, I cannot comment on how strong their pitch was.

Of the floor space at the Expo, at least two-thirds of it was taken up by huge, shiny vans, fancy wheelchair ramps, new-fangled hoyer lifts, and bicycles for every person which probably cost more than most disabled people make in a year.  The huge wheelchair conglomerates like Permobil and Braunability both had enormous displays.  There were new vans with new lifts, new seating options, new everything.  They had professionals in matching shirts trying to sell people on the idea that if they just bought this product, everything would be better.

 There was a great exhibit by a nationally-known nonprofit, Easter Seals, on adaptive products and toys, some of which you could borrow through a lending library that they have, but other than that, there was very little you could access without having money.  I mean, if I didn’t hate boats I might love to go on an accessible cruise, but the fact is that vacations are out of reach for the majority of disabled people.  Abilities Expo isn’t showcasing abilities at all; it is showcasing things that the average disabled person cannot ever dream of affording.

As Rae said, looking at the bicycles, “I really want to try one, but it would just make me sad that I couldn’t afford it.”  This, to me, was the crux of the problem with the Expo.  It is not meant for your average disabled person.  It is meant for a white, wealthy person in a wheelchair – and considering that there were two booths with new kinds of penile catheters and no women-specific booths at all, I suspect it is meant for men.  And hey, what do you know: in the hierarchy of disability, white, cis, male wheelchair users are at the top.  They are the ones leading many disability organizations.  They are the ones in power.  POC, GLBTQ, people with mental illnesses and developmental disabilities – we are just not on the radar for this kind of thing, because when Americans think of disabled people, they think of Christopher Reeve.  They don’t think of me, or others with invisible disabilities.  The very lack of seating at the Expo brought this point home quite strongly.

So – Abilities Expo is coming to your area.  Is it worth going?  Well, if you have a kid in a wheelchair, I would say yes.  This is because there are a *lot* of people on wheels there and it is a great chance to expose your kid to the idea that people like them grow up, have families, live and work in the community.  There are also lots of other kids in wheelchairs, which can be wonderful if your kid doesn’t have any wheeling friends.  The majority of adults in wheelchairs were happy to talk to kids and their parents and serve as role models.

I also think it is worth going if you use a wheelchair yourself or are going with a friend or family member who does.  Some of the products, unattainable as they may be, are pretty darn cool, and there is nothing wrong with dreaming. But if you have an invisible disability?  If you don’t know anyone else who is going?  Save your spoons and skip it.  The Expo is not made for you or me.

 

Car Scam Guy Vs. Logical Autistic Brain

                There are certain characteristics which I possess which, although I might like to think they are inherent to me, are in reality inherent to my autism.  They are attributes which I use to make up for my deficits in other areas. But until recently, I never realized how my deficits could also be attributes.  I never realized that meltdowns could be an advantage.  I never realized that sometimes, being weird and not following social norms could not just be a negative – they can be a positive, too.

                Life is weird.  Here’s what happened.

                I went grocery shopping.  I have yet to visit a Trader Joe’s with an adequate parking lot and this one is no exception, but I like their stores and there are certain products there, like olive oil, that I would never dream of buying anywhere else.  I very carefully slid my car into a spot, noting that the car to the left of me had parked an inch or two over the yellow line, intruding on my space.  I mentally grumbled about stupid parkers and opened my door very carefully.  I sucked in my stomach and reached awkwardly to get my purse, very careful to not touch the other car.  I can recall this because I have an autistic memory and that memory is really good.

                Fifteen or twenty minutes later, I was done with my errands and returned to my car.  However, this time, a man stood between my car and the car to the left. 

                “You damaged my car!”  he said. 

                “No, I didn’t.”  I replied. 

                “Yes, you did!”

                I peered closely to where he was pointing.  I saw nothing, not a scratch or a dent or a pockmark.  I recalled getting out of the car and how careful I was.  I began to get very, very confused, and meanwhile, Car Guy was raising his voice and saying how he needed my information, how his car cost X amount, how it was freshly painted that day, it was brand new, just picked up, I owed him money, I owed him this and that.  I began to panic.  I thought about points on my license and the $500 deductible I have which I had no way of paying and my insurance going up.  I thought about going to court and maybe jail. 

                My autistic brain and soul roared loudly in the face of this injustice.  I knew I had not hit his car.  Why did he keep saying I had?  In my logical, orderly world, people do not accuse others of doing things that they did not do.  But maybe I just wasn’t seeing the dent he swore was there.  I knew I was clumsy, maybe I had damaged his car. 

                In the face of his anger, I was terrified.  What did he want from me?  I didn’t know and I couldn’t figure it out.  Car Guy was not following any social script that I had ever learned.  So I did what most white people do when confronted with such a situation: I called 911.  I retreated to the store and retrieved the manager, who came outside and stood with me as we waited. 

                I should mention here that Car Guy was black.  I’m not sure of any other characteristics except that he was male and black, and from the moment that I dialed for the police I was absolutely positive that I had signed his death warrant.  Because if I have learned anything from the Black Lives Matter movement, it is that cops kill black people for no reason, even in small, ultra- liberal cities such as the one I live in.

                The Trader Joe’s employees were very nice.  They waited with me for the few minutes until the cops arrived.  By this time I was in full meltdown mode.  I was crying hard, flapping, and biting myself because I did not understand why I was being accused of doing something that I was 100% positive I did not do.  Did you go to jail for dinging a car?  Would the police shoot first and ask later?  How could I afford to replace his brand new car anyway?

                The police, as it turned out, drew no weapons.  They did repeatedly ask me if I needed to go to the hospital and I said no, I had high-functioning autism* and I was having a meltdown, not a heart attack.  I managed to retrieve my insurance information and license, and Car Guy and I exchanged information.  The cop peered at Car Guy’s door.  The cop admitted that there could possibly be some sort of mark there, and encouraged me to take a picture or two.  I did.  I called a church friend who lived nearby and she was on her way over, as I knew there was no way I could deal with this situation by myself.  I was still crying hard and beginning to have trouble breathing.

                “I didn’t do it!”  I kept saying.  Because I didn’t.

                Car Guy was clearly sick of this whole thing.  He took the piece of paper with my information on it, tore it up with the effect of tearing up a death sentence, and said, “I can’t stand how you’re crying.  You’re crying too much.  I’ll forget it, okay?”

                A few minute later, he had gotten in his car and gone, and my friend arrived.  The cops asked again if I wanted to go to the hospital.  Again I said no.  The cop explained very calmly that nothing was going to happen now, it was all over, and he hinted at something I did not understand.  He said that there was no way I could have hit his car where he said I did with my car door, because the angles did not match up.

                The cops left.  It was starting to rain.  I sat in my friend’s car and cried.  What had I done wrong?  Why was I accused of doing something I had not done?

                It was then that my friend explained to me what the police had been hinting at.  It was, apparently, a known scam.  Someone parks over the line, then accuses the stranger of damaging their car.  Since most insurances have high deductibles, Car Scam Guy assumes that the person will just want to get home and will offer the guy cash to make the problem go away.  Car Scam Guy wasn’t after putting me in jail.  He didn’t want insurance information or to know my name or where I lived.  He wanted an easy $20 or $50.  He thought that he could easily intimidate a plain-looking woman who was probably eager to get home at the end of the day.

                Of course, Car Scam Guy had no way of knowing that I was autistic.  He had no way of knowing that my brain and my body would go haywire at being accused of a crime that I did not commit.  He didn’t know that with my memory I could recall getting out of my car, and that my logic demands evidence and proof of wrongdoing.  He also didn’t expect my meltdown to be as severe as it was or as long.  I called for help, and help came, because I knew that I could not deal with the situation on my own.  When he saw that I clearly had advocates on my side, like my friend and the Trader Joe’s employees, he backed down. 

                I threw him off his script.  He knew that he had no evidence, that he would lose in court, in insurance, in whatever.  He knew this – but I didn’t.  I only knew that I was terrified and certain that I had done no wrong. 

                My friend said that in general, I should not call the police on black people, because it can be dangerous.  But this situation was different.  Car Guy was directly confronting me.  He was unfairly asserting that I had committed a crime (I actually don’t know if scratching someone’s car is a crime.  In my mind it is.) I had few resources at my disposal, and was losing my ability to communicate clearly.  Under the circumstances, I did the okay thing.  Under the circumstances, it all worked out okay. There is no Peace 911.  There is only an Emergency 911. 

                In the end, when the Logical, Emotional Autistic met the Scammer, the Scammer lost, not due to lack of effort on his part, but because I did not know the standard script for dealing with this type of situation.  My meltdown, something of which I have always been terribly ashamed of, ended up working in my favor because Car Guy did not expect me to be so emotional or to keep on being so emotional.  He had no idea that he had rocked my foundation of justice and goodwill in other people.  He just knew that I was weird, I was not giving him what he wanted, and I had people on my side.  So he fled, probably the best thing he could have done.

                Thinking it over, his story from the beginning did not make sense.  It had been pouring, vomiting even, buckets of rain for most of the day.  Who gets their car painted on such a day?  And who gets their car painted on the day they pick it up from the dealer?  And the price he was quoting me – $27,000 – seemed rather low for a brand new car.  My used car was over half that.  Logically, he didn’t make sense.  Logically, I should have known it was a scam.  But equally logically, it never occurred to me that it was.

                In the end, my memory, sense of justice and logic, and my meltdown equaled him giving up his scam.  My autistic self, the part of myself that I freely admit I dislike the most, saved the day. I do not know if Car Guy will try the scam again, but I am willing to say that if he does, he might choose his targets more carefully.  I am very, very glad that the incident did not escalate into violence, but I still have no idea what to do the next time I have a public crisis with a person of color.

                I cannot imagine living without autism, because it is in every cell of my body and brain and it makes me who I am.  Until this incident, I thought it made me a lesser, or at the very most an equal, person.  Now, I see that it may indeed mean something more.  It means that I am less resistant to other’s scams, that my logical brain and excellent memory can and will save the day, that even meltdowns have their uses sometimes.

                Now, if you’ll excuse me.  My logical brain may have done some great things, but it still won’t solve the problem of my cleaning my room.

 

*As a rule in my advocacy work I do not use the terms high and low functioning, as I believe that they are largely meaningless and take away from the shared sense of community.  However, I have found that there are 2 groups where I need to make an exception to this rule: when dealing with police and when dealing with doctors.  It makes communication much easier because it ensures that they see me as a competent person having a hard time, and also lets them know that I am my own legal guardian, medical decision maker, etc.

No one puts their children in a boat/unless the water is safer than the land

 

Despite it being a holiday, my local neighborhood pool was open today.  Because of the holiday, it was very nearly empty.  I was one of just three people in the vast expanse of crystal clear-blue water.  I lay on my back and looked up at the sky, for once empty of the airplanes that usually roar overhead, and I thought about the fact that it’s summer here.  And it must be summer in Syria.  And somewhere in Syria, there must be a swimming pool.  And sometime, somewhere in Syria, some other summer, some other woman must have laid on her back in the water and looked up at the same sky I was looking at.  The same oxygen and hydrogen and nitrogen and whatever else is in air – they made up the air she breathed. 

                Our planet is very nearly a closed system.   Sure, we send people and things up to space, and occasionally asteroids come down, but from my (very, very rudimentary) understanding of ecology and history, I know that the water in my faucet could have been drunk by an ancient homo erectus, somewhere on the African savanna.  I know that the sand I walk on could have been rocks a few eons ago.  That mammoths once roamed places we now name Manitoba, Saskatchewan, China, and Russia.  That the time of the dinosaurs is really just a blink away.

                Three-hundred-something years ago, people formed a country I now call mine, and even before it was formed, the leaders were deciding who had the right to live here, and who didn’t.  The Indigenous people whose language lingers in so many place names, even as most people today don’t know a single Native American Indian, they were the first to be deemed unacceptable.  They were rounded up, herded like cows to the slaughterhouse, killed by diseases that Europeans deliberately infected them with and which they had no immunity to.

                From the beginning, ours has been a nation made up of minorities – Spanish explorers, Chinese railroad workers, Jews fleeing pogroms, Irish fleeing famine, slaves and other people of color brought here against their will.  I think that maybe the founders realized this, and that is why they institutionalized racism just about as fast as they could, so that they could remain on the very top.  You name a group, white cis able bodied Christian men in this country have oppressed said group.  Women, people of color, disabled people, indigenous people, non-Christians, queer people, trans people  – none are truly free or equal to people like my brother and many of my friends are today. 

                This is not to say that my brother or my friends are not good, honest, hardworking people who deserve good things to happen to them.  It is just to say that due to their demographic, they have probably had it easier than anyone who doesn’t fall into a minority category.  It is just to say that it is this demographic currently running the country.  And it is this demographic that is repeating history, when you’d think we’d have learned from, oh, a few world wars and numerous genocides that happened right in front of our eyes in the last hundred years alone.

                Warsan Shire, a Somali-British poet, writes:

“no one leaves home unless
home is the mouth of a shark
you only run for the border
when you see the whole city running as well

your neighbours running faster than you
breath bloody in their throats
the boy you went to school with
who kissed you dizzy behind the old tin factory
is holding a gun bigger than his body
you only leave home
when home won’t let you stay.”

                There are people now fleeing their homes all over the world.  They are not fleeing homes made of camels and tents and desert sand.  They are fleeing modern cities with supermarkets and pharmacies and swimming pools.  They are fleeing the schools where they learned to read and the playground where their baby sat in a swing and laughed.  They are fleeing yards with trees where they once had picnics, surrounded by friends and family.  They most likely have no idea where the majority of those friends and family are now, unless their bones lie in a grave or at the bottom of the sea.

                But the park is a pile of rubble and the school has been closed for lack of teachers and the hospital closed for lack of supplies and there are great craters where the houses of their neighbors once were.  The peach and fig trees which once scented the air are cracked by the fires.  There are bullet holes in the storefronts.  They cannot just pack up and go to their sister’s in New Jersey because New Jersey is also in the midst of a war and the road is impassable, anyway.  A car drive that once took five hours is now as far away as the moon. 

                And since they can’t get to New Jersey – because New Jersey has no doctors, either, no teachers, no food – they decide that they will go then to the moon.  And they get on a boat or a train or a truck and they set off for the moon, and they never dreamed that the moon would refuse them.  After all, the moon has so much space, so much wealth. 

                The people in power right now – they think that the Syrian refugees and Iraqi and Afghani and South Americans who are all clamoring at our door, they think that they want the moon.  But they don’t.  They don’t want the moon.  They just want to live without the perpetual threat of their children being killed by bombs on the way to school.  They want to make plans with their brother about what to do about dinner, not what to do if he is kidnapped.  They want to fill their lungs with air and breathe out and sit under a tree somewhere and eat a peach.

                Do Syrian refugees not deserve peaches?  Do billionaires deserve tax breaks more than a child deserves an education?  If Jesus is truly who they worship, you would not value oil over a human life.  If Jesus was here now, he would welcome all refugees and he would know that Islam is a peaceful religion, and they are all our brethren, not our enemies.

                How can we call ourselves the land of the free when so many are not?  How can we call our people brave when they are not brave enough to reach out a hand to a stranger in need, to say hello, to say welcome?  It is all the same planet.  Country boundaries are arbitrary.  We are all citizens of the world, and it is about damn time that the federal government started acting like it.

The rest of Warsan Shire’s poem, ‘Home’ can be found below. I urge you to read and share it.

no one leaves home unless home chases you
fire under feet
hot blood in your belly
it’s not something you ever thought of doing
until the blade burnt threats into
your neck
and even then you carried the anthem under
your breath
only tearing up your passport in an airport toilets
sobbing as each mouthful of paper
made it clear that you wouldn’t be going back.

you have to understand,
that no one puts their children in a boat
unless the water is safer than the land
no one burns their palms
under trains
beneath carriages
no one spends days and nights in the stomach of a truck
feeding on newspaper unless the miles travelled 
means something more than journey.
no one crawls under fences
no one wants to be beaten
pitied

no one chooses refugee camps
or strip searches where your
body is left aching
or prison,
because prison is safer
than a city of fire
and one prison guard
in the night
is better than a truckload
of men who look like your father
no one could take it
no one could stomach it
no one skin would be tough enough

the
go home blacks
refugees
dirty immigrants
asylum seekers
sucking our country dry
niggers with their hands out
they smell strange
savage
messed up their country and now they want
to mess ours up
how do the words
the dirty looks
roll off your backs
maybe because the blow is softer
than a limb torn off

or the words are more tender
than fourteen men between 
your legs
or the insults are easier 
to swallow
than rubble
than bone
than your child body
in pieces.
i want to go home,
but home is the mouth of a shark
home is the barrel of the gun
and no one would leave home
unless home chased you to the shore
unless home told you 
to quicken your legs
leave your clothes behind
crawl through the desert
wade through the oceans
drown
save
be hunger
beg
forget pride
your survival is more important

no one leaves home until home is a sweaty voice in your ear
saying-
leave,
run away from me now
i dont know what i’ve become
but i know that anywhere
is safer than here.

Threenager

The news is depressing as hell.

Disabled people are literally asking politicians to not kill us and the politicians are asking why.

Nobody in my house is as clean as I would like them to be, including me.

My wonderful neighborhood pool has pipe problems and is delayed in its opening, and it is so humid you could cut the air with a knife.

And the entire country may be blown up by north korea, you know, any minute now.

So I slog on.  My back hurts.  My head hurts.  Everything hurts and there’s not much to do about it.

I look for jobs in my field to no avail, and in the meantime, in my part-time job, the world’s most adorable toddler has turned into a part-time demon.

I’m told it’s called being a Threenager.

Here are some verses I wrote about it.  I hope you enjoy.

 

I am a 3. I disagree.

I am a 3. I disagree.

 

I won’t get in my carseat

And then I won’t get out

I won’t ever be quiet

‘til it’s time to scream and shout

 

I’m a threenager, a teenager,

Who’s only 3 feet tall

Climbing tables chairs and railings

I know you’ll catch me if I fall

 

I vow I will stay naked

Until it’s time to take a bath

Then it must be time for snowsuits

And I don’t know why you laugh

 

I am capable and clever

Profound as a philosopher

But I lie on the floor screaming

‘cause I can’t eat the cat’s fur!

 

I’ve got the whole world’s future in the palm of my hand,

I’m trying hard to get it but I just don’t’ understand.

These grownups they just keep me down and keep me confined

They act as if I do not know my very own mind!

 

I’m doing acrobatics while I’m eating at the table

You say ‘please put your toys away’ but I don’t think I’m able

I hear it’s time to wash my hands but I’m too busy playing

I hear it’s time to go to sleep – I don’t know what you’re saying!

 

I kind of know my letters and most of my numbers too

I’m pretty sure my name contains an X, a Y, a Q

And though I may not know everything, it’s certainly more than you…………

Because I’m 3. And I disagree.

 

(note: this is actually a song and above mentioned three year old is in love with it and is now calling herself a threenager. but I can’t write music or explain and I’m pretty sure I borrowed the tune from five or six different places. I encourage you to make up your own tune and sing it to the toddler in your life.)