Please …..Don’t…… Pray For Me.

I’m having surgery.

The surgeon explained that, if my spine was a long row of jelly donuts, the bone would be the donut part and the discs would be the jelly.  And the jelly on one of my donuts – discs – is pushing out against a nerve and that is causing me pain.  He is actually the first doctor to say, ‘you must be in a lot of pain.’  Yes!  Yes, I am.  So they are going to go in and cut away the extruded part of the disc, and that has a 93% chance of eliminating my pain.

I like those odds.

I like the doctor.

I’ve been dealing with this injury for going on eight months now.  I’ve tried three different medications, chiropractor, massage, physical therapy and acupuncture.  Nothing has significantly helped, although I’ve recently discovered Tylenol with codeine and I’m kind of in love.

So anyway.  Surgery.  They’re being incredibly accommodating and I’m getting a special tour of where it will be happening and a meeting with the anesthesiologist and everything.  It’s day surgery and then I’ll go to my mom’s for a few weeks to recover.

I’m very excited and happy about this.  I post about it on facebook. One of my friends, a devout Catholic, posts that he will pray for me.

And now I’m having a dilemma.  Because I know that it is rude to tell other people to believe or what to do, but……but I really, really, really do not want to be prayed for.  Especially by a Catholic.

This makes me sound like a horrible person.  I’ve never doubted that I am, but I beg of you to please let me explain.

For an atheist, I have an awful lot of faith, just not faith in supernatural entities.  I have faith in human beings, in science, in rationality.  I have faith that my bones and tissue will be the same as the bones and tissue in other human beings, even though I cannot see them.  I have faith that the surgeon and his assistants have enough training and experience to do this procedure correctly.  I have faith that I can follow the limitations set for me after the surgery so that I do not reinjure myself.  I have faith that the painkillers and anesthesia will work.

So for me, when I hear someone say, ‘I’ll pray for you,’ when they mean that they will pray to a supernatural deity I know does not exist, what I hear is, ‘I do not have the faith that you have in science and doctors.  I think that something will go wrong, and that you can only be saved by divine intervention.’

I know, of course, that this most likely isn’t what they mean.  What they mean is that they will ask a deity that they really do believe in to intervene on my behalf, to ensure that things go smoothly.  My deist friends would say that god works through surgeons and through medicines too.  They would say that praying for me is an act of love, and that what they call god is what I know as love.

This may be true, but I’m realizing as I grow older that love and respect are not the same thing.  And I would much prefer to have both.

I believe very strongly that religions overall do more harm than good in the world.  People created the ideas of god and religion millennia ago because they lacked ways to explain the universe and the natural world.  However, we can now explain the vast majority of witnessed phenomena through science and scientific inquiry.  Last time I checked, there were no scholarly journals which affirmed that a deity exists.  (If there were, I would honestly be more than open to the idea of one.)

Religion causes wars and bombings and national and local policies that directly harm peoples health.  When abortions are outlawed, they do not stop, they just stop being safe.  The Catholic church has done an enormous amount of damage to the world by insisting that abortion and birth control are bad things.  They and other Christian groups have kicked people out of their groups for having a marginalized identity, like being gay.  I believe that religion, and especially religious fundamentalism, is a direct threat to the health and well being of this country. So when someone says, ‘I’ll pray for you’, what comes to my mind is not a smiling Jesus cradling children in his arms.  It is the centuries of hate and death and destruction that religions have wrought on people around the world.

I freely admit that I am not that well versed in world religions, and I know by far the most about the traditional Abrahamic faiths, Christianity, Judaism and Islam.  I have no idea if Buddhists and Sikhs and Hindus and Druids and all the rest have been as harmful as my research indicates other religions to be.

What I do know is that I would rather not be prayed for.  I would rather people acknowledge that my own hard work and persistence have been what pays off, not sending wishes upward to a nonexistent being.  My surgery will be paid for through government sponsored healthcare, which many religious groups are actively against.  If I lived in a state where the religious right has a stranglehold on the government, such as in Mississippi, I would be looking at living in pain for the rest of my life.  Instead, through the hard work of others who have come before me, I get a solution.  I get surgery.

And I am grateful.  I am so grateful to the lawmakers and ordinary citizens who made state healthcare possible.  I am grateful for the professors who taught my doctor how to do this procedure and for the high standards of the hospital I will go to.  I am grateful for the people who work to sanitize the operating rooms so I will not get an infection.  I am grateful I have family I can recuperate with.

I am grateful for people.  Not a deity, not a supernatural being.  Just ordinary people, working hard in their daily lives to make mine better.

I would like to acknowledge here that I am a bit of a hypocrite, saying that religion is a bad thing, because I myself identify as religious. However, and yes, this is probably even more hypocritical, I do believe that Unitarian Universalists are one of the few exceptions (there may be more – Quakers come to mind, but I don’t know, I’m not a religions expert) to the religion-is-more-harmful-than-good rule.  This is because UUism has no creed, has no fixed belief system beyond ‘be kind to the earth and each other’.  People are free to believe what they wish.  We do not impose our agenda on anyone nor cause direct harm to come to people who do not share our beliefs.

This is where UUism and many other major religions differ.  To go back to the example I gave above, the Catholic church has for decades been an instrumental force in forbidding access to safe, legal birth control in many countries.  As a result, women have more children than they want, and they are not able to provide for them properly.  They and their children may die in childbirth.  As another example, some religions do not believe in global warming.  They are so firm in their belief that this life is temporary, that we will all be happy in heaven soon enough, that they willfully ignore the real science that tells us our planet is in grave danger.  This leads to people losing their homes as sea levels increase, to animals and people dying as the weather grows more extreme, to the extinction of entire species, like polar bears, and, most probably, to the extinction of human life itself before too long.  I have not found any examples where UUism has caused direct physical harm to come to entire groups of people or other living things.

I understand that saying a few words to an invisible deity makes many people feel better.  But instead of talking to a deity, why don’t you talk to people?  Talk to lawmakers and ensure better access to healthcare for all.  Talk to your doctor and if they don’t accept Medicaid (as *many* doctors don’t) ask them why and put pressure on them to do so.  Talk to your town about fixing the broken sidewalks that make it hard for people with disabilities to get around. Talk to your bus driver about turning on the darn announcements so that blind people can know where to get off. Talk to your family about being more accepting of people of all abilities and diversities.  Talk to your friends about making social events more accessible to all.  Talk to me about what I should watch on Netflix and amazon while I recuperate from my surgery.

Just, please, don’t talk to your god, or any god, for that matter.  Not on my behalf.

 

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The Racist’s Guide to the Magic Cabin Catalog

So a few years ago I bought the Little One a Fancy Toy from a Fancy Catalog and got on a few mailing lists.  One day when I was home sick I was leafing through it and realized that, hey, you know what? Some of these toys are really rather racist.  Thus this post.

This list is meant to be satire and funny.  It is meant to recognize the ridiculousness and absurdity of some of these high end toys.  It is meant to make fun of the holier-than-though attitude written into the product descriptions.  And it is meant to point out the casual yet horrible stereotypes this company promotes and produces.  Don’t get me wrong, if I had endless money I would love to give (and heck, receive) many of the toys in this catalog.  They have some really, really cool stuff.  The selection below is merely the most egregious examples of hipster-toys-gone-too-far. And also, you know, white people who see nothing wrong with the fact that it’s 2016 and they are selling play tomahawks, for crying out loud.

Full disclosure: I got this idea from this post, http://adequateman.deadspin.com/the-2015-hater-s-guide-to-the-williams-sonoma-catalog-1746862116.  And all the images in this post were taken from the Magic Cabin website at http://www.magiccabin.com.

Pirate Ship and Pirates

piratespirates2

Ahoy there!  If you’re raising children of color and want them to have positive role models in organic wooden dolls, look no further than these pirate dolls, which feature one of the few play figures of color in the entire catalog in the form of a swashbuckling (what the feck does that even mean) sailor who is out for blood and treasure.  While you’re at it, throw in the only disabled doll this company offers in the form of a captain with a peg leg.  Two stereotypes for the price of six!

(image of a wooden pirate ship and 6 wooden/cloth pirates, one of whom is  person of color, in colorful felt clothes.)

Price: $32.98 – $259

Eco Bricks

woodenlegospirate-shippirates

 

In case it is not apparent from the description and photos: these are legos (trademarked).  They are fancy, eco-friendly cherry wood legos, to be sure, but when it comes down to it……they are legos.  Some time ago, some brilliant Danish person came up with the great idea to make tiny, attachable bricks that adults and children love.  Today, you can get legos in every shape, size, and color imaginable.  If you have a fandom, they have a lego set for it.  The only problem with legos, however, is that they are – gasp! – plastic.  How you could even consider letting Mildred and Tobias play with something plastic is beyond me.  Sure, the original legos are colorful and these are all the same pale blonde wood which matches the children’s hair, but the kids can color and paint these so that you can be reminded of how terrible their fine motor skills were for years to come!  And if you isolate them enough so that they do not know media exists, you can also hold off on the begging for the Star Wars sets or the Harry Potter sets or the Women in Science sets (which is pretty cool.)

Real question here: do the eco-friendly cherry wood non-legos hurt when you step on them with bare feet?  If so, maybe they are worth the cost.

(image of pale blond bricks that look exactly like legos, but wooden.)

Price: 19.98-64.98

Deluxe Wool Felt

felt

Is it made of wool, or is it made of diamond unicorn droppings?  I don’t know.  But at eight dollars a piece, or less when you buy it in sets, I’m betting there’s something special about it, besides the fact that it is 100% wool and imported from Europe.  Sure, you could get the same thing on amazon for next to nothing, or get (gasp!) synthetic felt at the craft store for 30 cents a piece, but this is real wool.  From real sheep, not plastic sheep.  Can you imagine giving your children anything else to cover in glitter and tear into pieces?  I certainly can’t.

(image of felt in a variety of colors.)

Price: from $7.98 for an individual piece of 18 inch felt, to much more for packets of it.

Food Truck Play Set

food-truck

Although ultimately losing to the above Eco Bricks, the wooden Food Truck Play Set was a runner-up for the winner of the Most Hipster Toy Ever contest this year.  It’s not enough for children to just use ordinary blocks or playgrounds to pretend to be today’s consumers of street food, no, they must also have this Food Truck set.  Despite the fact that the majority of food trucks sell ethnic cuisine from around the world, this food truck set reinforces the idea that Americans should only eat ice cream and pizza* by providing tiny wooden examples of each.  Don’t forget your ethnically-ambiguous servers to go with them.

*seriously I’ve seen a ton of food trucks, they are wicked popular in my area, yet they don’t ever have a pizza food truck because good pizzas require huge ovens.  Pizza is just not part of food truck culture, period.

(image of 4 dolls, two with light hair, two with dark hair maybe meant to be Hispanic, posed around a blue wooden food truck with wooden ice cream and wooden pizza.)

Price: $59.98

Frontier Fun Dress-Up Sets

indianset

Are you tired of not being able to buy high-quality culturally offensive toys for children?  Well, look no further than Magic Cabin, which has decided to bring back the 1950’s with ‘frontier accessories’ made in Germany, where at least some people are following in their ancestors footsteps with the demonization of certain groups.  Let your child pretend to scalp their friends with the tomahawk or the knife!  Conveniently ignore the fact that feather headdresses are part of sacred cultural and spiritual rites to certain groups of Native Americans – laugh as your lily-white child dresses up and makes ‘war whoops’.  Don’t forget the bow and arrows to shoot the ‘bad guys’ with.  Not included are blankets infected with smallpox or any evidence of the genocide white people committed against Native Americans.  Also not included is black oil that your children can smother their brown friends with as they explain that an oil pipeline is more important than Native graves and Native lives.

(image of a blue wooden knife/sheath, a wooden bow and arrows set, a tomahawk, a feathered necklace and a feathered headdress.)

Price: $24.98 – $39.98

Wee Wild Westerners/ Lil’ Log Cabin

weewesters

log-cabin

Magic Cabin would like you to know that it is totally okay to mix up separate nations and cultures and treat them as one indistinguishable group, so long as they all wear feathers as part of their costumes and you call them Native American Braves, instead of Indian Brave.  They’d also like you to teach your children that white people was the only acceptable color of pioneers, and that they made cute furniture our of natural Baltic birch and solid pine.  Magic cabin boasts that the accompanying ‘Lil’ log cabin’ will last for generations, ensuring that a hundred years from now the same tired stereotypes can educate and inform your descendants.

(Image of a ‘Native American’ family in some odd mash up of clothing and feather headdresses as well as a white family in traditional western garb, and a wooden cabin with tiny white people and tiny wood furniture inside.)

Price: $12.98- $149 (for all the dolls) up to $359 (for dolls, cabin, and furniture.)

 

How do you raise a white child to not be racist?  How do you raise a child of color with their self-esteem intact?  How do you explain to children of indigenous people why it is okay for other kids to take the sacred objects of their culture as toys?  I have no answers, only more questions.

Why is it that there are baby dolls of color and some dollhouse dolls of color in this catalog, yet many of the playthings have to do with magical beings such as elves, fairies, and gnomes, and none of them – none of them! – have darker skin?  Why do they have diverse models and not diverse dolls?  Why in the world is their doll nativity set all white, including the three kings?  For gracious sakes, you have a black child model playing with them!

In order to raise consciousness, in order to raise community, in order to raise the world up to the level on which we are all recognized as equal human beings, we need to start small.  With something as small as a doll or a playset.  We need to acknowledge racism when we see it, and call it out, and say: this isn’t right.

Thankful

Some of my friends were posting something they were thankful for every day of November.  I’m not that disciplined.  But I did decide to take the idea of the Thankful Thirty Days, and here it is.  All at once.  as I am.

A very incomplete, rather random, list of things I am thankful for.

In no particular order:

  1. My mom.  I’ve come to discover that my mental health may be a bit too dependent on seeing her at least a few times a month.  She has supported me and advocated for me as best she could since I was five months old and she took me to the doctor and said that something was weird with me.  She has always known me best.  Her house is a clean, cool safe haven.  She takes down the wind chimes before I come over.  She buys organic milk because she knows I can taste the difference. She defends me to relatives.  We love to walk together, watch television, and gossip.
  2. Thea-the-therapist.  Another big part of my support system.  I honestly don’t know what I will do when she retires in a few years.  She has helped me to come to so many realizations about who I am and where I am going in life.  When I am panicking over anything she will text back at 11 pm at night.  She teaches me about the world and about how we should never expect too much of a stupid people.
  3. Medicine.  Specifically I am grateful for ibuprofen, without which I wouldn’t have gotten through this year.  Psychiatric and pain medications enable me to live my life.
  4. Medicare/state health care.  It pays for the above medications, and doctors appointments, and specialists appointments, and even acupuncture, which is the only thing I have found that will relieve my pain so far.  It doesn’t pay for Thea but for everything else, it is pretty awesome and I am grateful.
  5. Children. The kids that I am lucky to know are so amazing.  I love watching them grow, learn and develop.  We have so much fun together.  The only problem is that they grow up all too fast, but at each stage of their life I find something new to love about them.
  6. Chocolate.  Any kind but white.  It makes me happy and it tastes good.
  7. The country.  I live in the city but with a quick 30 minute drive I can be in a facsimile of wilderness.  I can breathe in the deep, raw smell of the earth and the leaves decomposing.  I can hear birds and insects and feel connected and grounded.
  8. My car.  I’m very well aware of how I’m killing all the polar bears with all the driving I do, but my car makes it so much easier for me to get places and not have to deal with people.  It gets me work, it gets me play, and it’s been a lifesaver this past year when I haven’t been able to walk more than a block or two due to back pain.
  9. Plumbing.  I’ve seen outhouses.  I’ve used outhouses.  I am so, so grateful that I do not have to use outhouses on a daily basis, and that clean, drinkable water comes out of my tap whenever I turn it on.
  10. Books.  Reading was my first love and although I probably read more on the internet than on paper these days, I remain a devoted patron of libraries and revel in the smell when you crack open a new one.  Books educate and entertain me and enable me to escape.
  11. Jess.  Jess is just so damn wonderful.  We met through autism but we became friends because we have so much in common besides autism.  We connect in a way that I connect with few other people.  I feel comfortable with her and relaxed. Her entire family has embraced me and shown me that a family can be happy not just in spite of autism, but because of it.  Because of her, I have learned that I do not have to put up with anything or anyone that hurts me, and that there are people out there who can both accommodate, accept, and respect me.
  12. Water.  I love pools, ponds, oceans, bays, beaches, you name it, I would like to be in it.  Water rejuvenates and reenergizes me the way nothing else does.  When I am in the water I am one with the world.
  13. My friends.  I’ve got some amazing friends.  I can’t name them here because, well, anonymity.  But they are pretty – I’m running out of variants on amazing.  They just are.
  14. Unitarian Universalism.  A religion that guides my life and provides a firm footing on which to base it in the form of the Seven Principles.  A church that welcomes my militant atheism.  It isn’t perfect, no religion is, but it is where my soul ever shall reside.
  15. The autism community.  I’ve met some pretty awful autism parents, yes, but they are far outweighed by the wonderful ones.  I love meeting their kids and being able to explain why something is going on.  I love finding commonalities beyond autism.
  16. The autistic community.  In the autistic community, meaning, people who are actually autistic, and not just connected to autism, I can relax like nowhere else.  Local self-advocacy meetings are kind of like hanging out at that perfect bar in television shows, except that many of us are face blind so we probably don’t know your name.  I will never forget being in a room about half autistic and half not.  An autistic person made a joke and every single autistic person laughed and none of the non-autistics did.  That memory would spark my Patronus.
  17. The disabled community.  My friends have every kind of disability you’ve ever heard of, and many that you haven’t.  And yet they are all kind, hardworking, genuinely good people that you want on your side.  They are all on my side, and the community that is disabled people grows stronger and our voices are raised higher each year.
  18. Queer people.  LGBTQIA, the acronym that seems to be growing longer all the time but all I know is that they are awesome and I love them.
  19. Politics.  In four years, no matter what happens, we will have a new president.
  20. Music.  For whatever reason, ever since I can remember, I have always, always had a song running in the back of my mind.  Luckily for me, most of the time it is good music, because there is so much good music out there. Right now it is ‘happiness runs’.  Christmas music and folk music and show music and a cappella music.  Clear and bright and calming.
  21. My bed.  Sometimes I really want to explain to people that I am in a very serious relationship, and it is with my bed.  Cool in summer, warm in winter, just the right amount of everything.  Where I retreat to.  Where I meltdown.  Where I ride out pain both physical and psychological.
  22. The swing in my dining room.  Matthew brought it with him when he moved in here.  It is a hammock swing.  It is beyond awesome.  When I was young I used to dream about my dream house and it had a swing in it but I knew that was just a fantasy, real people did not have swings in their houses.  Well, guess what?  I do.  I have a swing.  I have a swing in my house.
  23. The internet.  I just love the internet.  I read, read, read all day long on it.  I explore worlds and have discussions and lose myself in fantasy.
  24. Social media.  Some people think social media is a bad thing because it diminishes our connections with other people.  I disagree.  I think social media is amazing.  It has enabled me to strengthen my ties with others and socialize in a medium I am truly comfortable in.
  25. Texting.  Like many autistic people, when I am very stressed out or exhausted or close to a meltdown I can lose the ability to speak, or my ability to speak diminishes greatly.  Texting solves this problem.
  26. Dairy products.  Cheese, milk, ice cream, yogurt. Many humans, maybe even the majority, lack the ability to digest lactose, but I am really glad that my ancestors developed this ability and I still have it.  I will never go on a casein free diet because I would starve.  I have yet to have a truly excellent dairy free cake and you know what drink goes best with cake?  Milk.
  27. Baking.  My baking is a lot like me – it often doesn’t look that great, but it is what is on the inside that counts.  I get a lot of satisfaction out of knowing that people like eating what I have made.  Sugar and flour and butter equals happiness, even if only for a moment.  It is a way I can contribute to almost any event.
  28. Holiday decorations.  I truly think the best part of a holiday is the anticipation of it, and a big part of the anticipation is decorating.  I love making baubles for the Christmas tree and untangling lights (which I’m really good at for some odd reason) and carving pumpkins and blowing eggs at Easter.  I delight in all the wacky, over-decorated houses around town.  Despite how awful it is to clean up, I am firmly in the camp that the more glitter, any time, anywhere, the better.  (It may be my fault that glitter is now banned in my church.  I am truly sorry for this.)
  29. Writing.  I am so grateful that I have the ability to set words down on paper (or on screen) and have other people read them.  My writing is a way that I can express myself without worrying about how people will react right then.  I can say things in writing that I would never, never in a million years, say aloud.  I can be myself.
  30. Right here, right now.  I am grateful that I live in the place and the time I do.  I would never have so many rights and resources as I do if I lived virtually anywhere else on earth.

On Sewers and Superheroes

sewer

(image is of a murky London sewer with an indistinct human figure in the background. I promise the image does relate to this post.)

In my experience, there are three types of people who work in the disability field.

There are those with disabilities who got into it because they want to advocate for themselves and others, who want to give back to this wonderful community, who may have trouble finding a job anywhere else.

There are parents – let’s be frank here, it is mostly mothers – of children with disabilities, who saw a gap in services or supports and decided to fill it, or who took their advocacy for their child to the next level, and the next.  This group also includes siblings, cousins, other family members of PWDs.

And then there’s the third group, who stumbled into working with and around disability and disabled people because they took a class in college and liked it, or volunteered with X organization, or met a kid at church and wanted to help, or for whatever reason decided that disability services of some type would be their chosen career.

I was in a group yesterday and it emerged that a woman in said group had come to disability via the third route, and immediately, did she get accolades or what.

“I really appreciate what you do,”

“I mean, when people without any connection -,”

“It’s so admirable.”

“You’re heroic.”

My stomach turned sour then.  I looked at the woman.  She had not rescued any kittens from a burning building.  She had not invented new vaccines or stopped a war or done……or done anything heroic or exceptional at all.  She just…….chose to work with disabled people.

The logical conclusion that I reached was that all the people admiring her thought that working with me and with people like me was so bad, was so difficult, that she must have some extra-special quality that allowed her to do so.  Because why would ordinary people ever choose to work in such an unforgiving job?

Please pretend I’m Amy Pohler here when I say REALLY?

REALLY.

You know who I think is heroic?  People who run sewers, and who deal with sewage all day, and ensure that we have clean drinking water and that what goes down pipes stays down and who unclog the massive clogs in huge city sewer systems.  They deal with bacteria and germs in the infinite, they deal with rats and bugs and body parts and throw up and probably alligators – I mean, WOW.  To do that all day, and keep coming back?  THAT is fucking heroic.

Or urologists.  You know what urologists do all day?  They deal with pee.  Or gastro-enterologists, who deal with poop.  Most adults spend as little time as possible thinking about either of these things – we train kids to use euphemisms like wee-wee and b.m. – we as a society are incredibly ashamed of these things that our bodies produce – and these doctors, voluntarily, stick cameras up our bums and look at smears of it on microscopes, to make sure that people are healthy.

If that’s not heroic I don’t know what is.  Except for maybe being the camera.

When I call these people heroes, what I am saying is that their jobs are harder than most jobs.  They require more skill, more education, more sweat and concentration than your average job.  They also require a body that does not throw up every two seconds when dealing with things like sludge and sewage and urine and vomit. 

But last time I checked, the majority of jobs in the disability field (personal care excepted, and even then it’s usually just one person’s caca, not a whole city’s worth) do not require dealing with bodily fluids.  They require concentration and education and hard work, but no more so than an accountant or architect or anteater-zookeeper requires.  Maybe a touch more empathy?  But lots of jobs require that.  I don’t know.

I do know, however, that I do not particularly admire these people, and I do know that when our society admires them just for doing their jobs, it is basically saying, WOW, we’re messed up.

Because this idea is not just wrong, it is damaging on both a personal and on an economic scale.  This idea that people who work, not just in the disability field but in fields like childcare, social work, teaching – are somehow intrinsically motivated and have a heroic bent, it causes us to value their very real, very physical, work less.  A lot less.  And they get paid a lot less.

                This relates to the idea that because someone enjoys their job, they should not get paid at all for doing it.  There is a lot of unpaid labor that goes on in various circles, but I am thinking specifically of the disability world because, well, that’s where I do my own unpaid labor.  As a writer, I have been asked to contribute to various publications and anthologies where I will not see a penny of profit.  For most of my life, I did this without complaint.  The exposure and the thrill of seeing my name in print was enough reward for me.  However, in recent years I have started to say no more often.  I have chosen to give my writing to only two or three selective places; for everywhere else, I ask for payment. 

                Last year, someone wanted to, as they said, ‘pick my brain’ about a business they were starting having to do with autism.  Certainly, I would be glad to, I said, and then quoted my hourly rate.  “Well, I’ll just ask someone else, then!” the person said, and went off in a huff, astonished that I had the gall to ask for money for a service I provided. 

                I have had occasions now to get paid for the disability advocacy work I do.  It is usually not much, just a stipend, really, but somehow, when money enters into the equation, the whole situation changes.  I am not just a volunteer.  I am not just another out-of-work disabled person showing up to a meeting because I have nothing better to do.  I am a professional.  I am not invited to be a guest at the table but a vital part of the discussion.  I had one such meeting this past week.  It was indescribably joyous for me.  I left the meeting feeling proud and competent and equal.

                Yet, no one would ever call me a hero for the work I do, because I am disabled.  My entry into the disability community was automatic.  When someone who isn’t disabled and who doesn’t have an automatic connection to the community chooses to do the same work I do, it is seen as heroic.  I believe that society creates these narratives of heroism in order to justify to ourselves the economic hardships we force people who work in ‘hero’ fields to undergo. 

                The fact is that people can love their jobs and they can love the people in their jobs.  Childcare providers undoubtedly love their charges in a way that I doubt a graphic designer loves their computer.  But love doesn’t pay the bills, and the emotional labor that many fields require is greatly undervalued.  This is why the idea that you need to be a ‘special’ person in order to work with people with disabilities is so very wrong on all levels.  It devalues both the people being served and the person serving.

                I heard a story once about a guy in London who had to break up a ball of grease in their sewer measuring many feet across or risk the entire system breaking down.  In fact, right now, many sewer systems in the US and Europe are about 100-150 years old and are steadily crumbling and decaying.  The men and women who ensure that I can continue to use the bathroom in peace and not have scary alligators and things come up the drain?  They are heroes.  Make no mistake.  They are heroes just as a teacher’s aide working with autistic children or a self-advocate visiting a legislative office or a nurse in a hospital is a hero.  Yet for some weird reason, our society has decided that all of these works of emotional and physical labor are worth different amounts, and some are worth nothing at all.

                It should be noted that I have absolutely no answers to any of the questions I raise here.  I have no solutions.  I only have myself and my keyboard and screen and my rather annoying inability to ever shut up.

                Work is work is work.  Sorry, teacher’s aide, you are not my hero.  I’m saving that title for the people in the sewer drain.

Wings: A Short Story

I rarely write fiction, not anymore, at least.  When I was younger I would fill up page after page with original fiction and fanfiction, but perhaps because I have so few life experiences compared to many people, it always falls short.  This is a short story that percolated in my head for years before I wrote it, sometime in 2015.  I’m posting it now because I needed something to update the blog with and I needed something cheerful.  I don’t know if this exactly counts as cheerful, but it’s not as sad or depressing as the things I usually write are.  I also happen to think that it is a decent model of disability as a social construct.

Anyway.  I like it.  I hope you do, too.

WINGS

 

When people hear what I do for a living, they generally blanch.  They don’t know what to say, so they stammer out something about how noble I am, how hard it must be.  They can’t crack a joke to break the tension because my profession isn’t something that gets joked about – it’s something that gets pity, yes, and admiration, yes, but jokes?  No.

Yet it never ceases to strike me as funny that people feel sorry for me – me, when I only work with them, when I am as normal as normal could be.  The truth is that the children in my care are just that, children, and the fact that they have such a devastating, disfiguring disability is hard for them and them alone.  Not me.

“But isn’t it sad?”  people ask, “being around, you know, the wingless all day?”

And they always seem surprised when I answer that no, it’s not sad.  They are children – they laugh and they play and they learn much as other children do.  And when they fly (and yes, it’s perfectly okay to say ‘fly’ around people who don’t, I mean, whoever went for a ‘walk’, anyway?) up the stairs into our modified building,  they are there not to be cured but to be accepted, loved and taught.

Inside our building – The Icarus Community Home and School, so much better than what it used to be known as, the School for Crippled Wingless – things are, by necessity, low to the ground.  Light switches, for instance, are about four or five feet off the floor.  Instead of the usual stools, these children sit in medical devices known as chairs, which have a back to them like a shelf might to help hold up their weakened bodies.  Broad flights of stairs connect the levels to one another, and every single room is accessible by hallway.

It’s actually a misnomer, by the way, to call all the children wingless.  Some do have stumps or sharply jutted bones where their wings should be.  Some have a few feathers on their backs.  Some were born with twisted wings which had to be removed lest they grow into the spine or something.  When it comes down to it, these children are flightless, not wingless – although that doesn’t stop them, of course, from trying to fly.  It usually takes three broken bones before your average six year old stops trying to make her flimsy, non-functional fifth and sixth limbs work and gives up.

At some point, though, they do give up on flying, and they learn to walk, and they learn that, in our world, at least, walking isn’t so bad.  It’s really only an annoyance on really rainy days, or when you have to cross a body of water.  And of course, most cities don’t have people roads on them yet or, as they say in the disability community, sidewalks.  Sidewalks are these strips of tarmac made for people to walk on, next to the traffic, instead of above it with regular people.

Actually, one of the problems with our wonderful school is that when the kids leave it, they aren’t expecting the teasing, the stares or the general inaccessibility of the world.  We tell them that they can do anything, but they quickly find out that they can’t.  They can’t reach the second, third or fourth stories of almost anything, because despite the Americans with Disabilities Act being twenty-five years old, most places still lack stairs.  They can’t play with other kids on playairs because they can’t get into the structures.  (At our school we have built our own playair, which we call a playground, where they can reach everything.)

The stories that these kids tell me sometimes break my heart – about other children being warned away from them, like being wingless was something catching, about the subtle and not-so-subtle stares and looks of outright disgust.  No matter how many times the staff at Icarus repeats that disability is natural, the majority of the world is quite firmly on the side that being wingless is unnatural.

This is why I’m so glad that we’ve got a half-dozen staff members who are wingless themselves, and who teach our students how to live their lives on the ground.  The input of these people is priceless, and to think that just a generation or two ago, the wingless were locked up in their homes, kept away like a dirty secret.  The progress that we have made convinces me that we can make still more.  The wingless will demand their rights, and America needs to be ready to give them.

So no, I don’t see my job as sad.  I see it as amazing – getting to know these kids who I know will change the world.  They don’t need to fly, after all, to be able to go places.

 

 

Author’s Note:

If you didn’t figure it out, this is the perspective of a special-needs teacher in a world where all humans have wings and fly easily, everywhere.

An Alternate Universe Where Disabled People Aren’t Murdered

Although I’m the first to admit that the very idea is fantastical and very much improbable, I like the idea of alternate universes.

Alternate universes are worlds like ours, but different.  They are every fiction story ever written.  They are fanfic.  They are what would happen if this battle was lost or this person lived or that person took the left road and not the right one on a summer evening.  They are constantly created, constantly evolving, just as we do.  Alternate universes are the home of fantasy, magic, play, hope and joy.  They are also where evil lurks, the Nazis won, vampires and werewolves rule, and the feudal system is spread over all the different continents on different planets in different spaces than ours.

There is an alternate universe where Harry Potter and Sherlock Holmes both exist, and where Mycroft Holmes absolutely hates dealing with the wizarding world and they feel much the same about him.

There is an alternate universe where the American Indians conquered Europe instead of the other way around.

There is an alternate universe where people have wings.

There is an alternate universe where I have a real job.

There is an alternate universe where everyone agrees that Black Lives Matter.

There is an alternate universe where people stop killing disabled people.

All of these are, unfortunately, equally improbable scenarios.

Something really horrible happened in Orlando, and my Facebook lit up like a Christmas tree.  Something really horrible happened in France, and people posted stuff in French that I don’t know what it meant because I don’t speak French but I assume had something to do with solidarity or something.  Something really horrible happened in Iraq, and my friends ask why the news media doesn’t cover it.

Something really horrible happened in Japan.  Really, really horrible.  Someone targeted people, and not just any people, but my people.  This person declared (last winter!) that disabled people deserved to die and he would kill them, and he did.

He murdered nineteen people and injured forty nine.  

Once again my Facebook lights up, but there’s a crucial difference.  Now, only my friends in the disability community are talking about it.

Only we are weeping.

Only we seem to care.

People say that people were murdered ‘in cold blood’.  I don’t know what that means.  Blood is warm.  I gave blood a few weeks ago and they lay the bags against my legs for a moment and I was genuinely surprised at how warm it was.

Blood is, give or take, 98.6 degrees F.  You cannot murder someone in cold blood because if their blood was cold they would be dead already.  You can only murder them in warm blood, in hot blood that spurts out and drains away from the body, leaving people conscious for agonizing minutes as their life force attempts to rush to their heart and brain.  Thanks to my own morbid fascinations I know about death.  I know how it works, how the body resists dying.  How it dies anyway.

At some point in high school English most everyone studies the Dylan Thomas poem, ‘Do not go gentle into that good night,’ and although I hated English overall, that poem is famous for a reason.  It’s a good one.  It’s about how we all – it only refers to men, but I do think it means all of humanity – fight to live, no matter what our circumstances.  We waste time, we do not realize how valuable it is, until the end, when we ‘rage, rage against the dying of the light.’

The media hasn’t even released the names of those murdered (on Tuesday, July 26, 2016) yet.  We know precious little about the precious lives that were lost.  Only that they were disabled, and were shut away, out of sight, out of mind.  And I will not begin to attempt to unravel the cultural or societal factors which we must consider here, except to say that I acknowledge that this tragedy is harder to bear for disabled people of color.

And anyway, I don’t think it was Japanese society or culture that led that man (whom I refuse to name, he gets so much press time anyway, he doesn’t deserve it, they do and I don’t know their names) I don’t think it was Japanese society or culture that led that man to murder.  I think it was worldwide society and culture, and the fact that, worldwide, non-disabled people simply do not see the value in disabled lives.

And that scares me.  Terrifies me.  In the deep, cold, bottom of my soul there is a fear that I cannot get rid of.

And that was just this week.  Last week, the very worst of American society came together when an autistic mans’ therapist was shot by police as he attempted to help his client in a public space.

The last I heard, the officer who shot the therapist (and was aiming for the autistic, Arnaldo Soto) had not been charged with any crimes.  The therapist, Charles Kinsey, survived, but both he and Soto are beyond traumatized by the event.  Two laws were broken: being black in public, and being disabled in public.  Not allowed.  Both men were POC.  Not safe.

I cannot help but feel that my thankfulness over this is somehow misplaced.  Shouldn’t I be outraged instead of thankful?  Shouldn’t I be angry?

Only I don’t do anger so well.  My body doesn’t know how to deal with it.  My brain cannot process these incidents as they continue to happen, over and over, again and again, and nothing is done, and nobody cares except the people who have been caring all along.

My body is sadness and pain and heat and headache and heartache.  It is batshit terrified that my friends of color will be the next headlines.  It is exhausted and battered.  Can your soul ache as well as your head?  My soul aches.  My soul aches for these beautiful people, and for this world which says that these beautiful people have no right to live in it.

I cannot read anymore, I cannot watch anymore, I cannot listen anymore.  Too many murders, too many bits of metal whizzing through warm bodies, too much blood soaking the streets and the floors.  I turn to my fiction, to my Harry Potter and Sherlock and BBC fantasies.  I turn to my alternate universes where none of this exists and it is just me, and a book, and my ipad, and the peaceful English villages filled with happy people in old fashioned clothes who never existed except on the screen and in my mind.

I cannot hold anymore.

I cannot do anymore.

Here is a song.

It’s by Tim Minchin.  It’s called ‘Quiet’ and is from Matilda, the musical.*

Have you ever wondered, well I have.
About how when I say, say red, for example.
There’s no way of knowing if red
Means the same thing in your head
As red means in my head. When someone says red

It’s as if we are traveling at, almost the speed of light
And we’re holding a light
That light will still travel away from us
At the full speed of light, which seems right in a way

What I’m trying to say, I’m not sure
But I wonder if inside my head
I’m not just a bit different from some of my friends
These answers that come into my mind unbidden
These stories delivered to me fully written!

And when everyone shouts like they seem to like shouting
The noise in my head is incredibly loud!
And I just wish they’d stop, my Dad and my Mum.
And the telly and stories would stop just for once!

And I’m sorry, I’m not quite explaining it right.
But this noise becomes anger and the anger is light
And its burning inside me would usually fade.
But it isn’t today!
And the heat and the shouting.
And my heart is pounding.
And my eyes are burning
And suddenly everything, everything is…

Quiet
Like silence, but not really silent.
Just that still sort of quiet.
Like the sound of a page being turned in a book.
Or a pause in a walk in the woods.

Quiet
Like silence, but not really silent.
Just that nice kind of quiet.
Like the sound when you lie upside down in your bed.
Just the sound of your heart in your head.

And though the people around me.
Their mouths are still moving.
The words they are forming,
Cannot reach me anymore!

And it is quiet.
And I am warm.
Like I’ve sailed.
Into the eye of the storm.

*overall, I dislike this musical as the parents and Trunchbull characters are awful and overblown and overbearing, but the character of Matilda is fantastic in it and I highly recommend googling and listening to this song, there are several good versions on youtube.

 

best place to learn about Japan tragedy is here: http://carlyfindlay.blogspot.com.au/2016/07/the-silence-around-sagamihara.html

 

What Autistic People Can Learn From Little People

 

As the holiday weekend approached, I found myself with no plans and, rather than spend it alone, I recalled that last winter, a friend that I knew from disability circles had been looking for some volunteers for a convention she was helping to organize.  So I texted her, showed up, and spent three wonderful days volunteering at the world’s largest convention for people with dwarfism.

Little People of America is a huge organization that was founded in 1957 and, unlike many disability organizations, is run almost entirely by and for the population that it serves, in this case, little people – also known as dwarves.  (Dwarf is the medical term for people of short stature, but their community is called Little People, or LP’s.)  As dwarfism is not the most common of disabilities, I have not had that much opportunity to interact with LP’s before, with the exception of my friend whom I already knew.  However, I always, if you will excuse the pun, looked up to the LPA as a model for what the autistic community could someday become, and after my experiences at the convention, I am more sure than ever that little people are people whom autistic people should emulate.

The LP community has many things in common with the autistic community, as well as many differences.  One major similarity is that just as autism presents itself very differently from person to person, so does dwarfism.  Many little people have secondary disabilities, but these mostly relate to their particular type of dwarfism.  For example, skeletal problems, breathing difficulties and hearing loss.  One interesting thing I noted was that many LP can walk short distances but use scooters or wheelchairs for longer distances and to fully participate in activities.  This to me is similar to how many autistic people can use verbal speech, but prefer to type or use electronic communication systems when they want to fully express themselves.

Another similarity is that LPs are of all races, classes and cultures.  I met LP’s from all over the country and the world.  Dwarfism, like autism, also tends to be genetic, but not always.  As a result, families there could be made up of all LPs, just kid LPs, adult LPs with some kid LPs and some not, just about every configuration you could think of.  Sometimes parents and kids would also have different levels of physical functioning. This is very similar to how in autism families some people have it, some don’t, and some people need more or less support within the same family.

Autistic culture and LP culture also appeared to be similar in that people genuinely cared about each other, and were happy to see one another.  The kids were seen as a vital part of the community, newcomers were welcome, and the atmosphere was very jovial and friendly.  It was clear that the people there delighted in being with others like themselves, and I have seen this same dynamic at work in autistic circles.  There is truly nothing better than being able to say ‘oh, you too? I thought I was the only one!’

However, there were and are also some major differences between autistic and LP culture, the chief one among them being that LP’s, overall, do not have the communication or executive functioning problems that autistic people face.  As my friend said, many LP’s do not consider themselves disabled at all.  They are disabled enough to get a parking placard, or help with employment, maybe, but that is it.  While LPA as an organization has become involved in some disability coalitioning, some LP’s do not see themselves as part of the disability community, and maybe in part that is because they do not have to.  Autistics often do not have this choice.  We have needs that we cannot deal with alone, and so we need the disability label to get help and support on an everyday basis.

I do not mean to dismiss the challenges that LPs face, but autism is hard, in a way that many types of dwarfism are not.  Dwarfism primarily affects the body, but autism affects not just the body but the mind, every part of the body and brain. Autism is joyous, wonderful, delightful – but it is also hard.  Autism disables you in every single aspect of daily living. From what I observed in the LP community, many people there only deal with physical disabilities.  They communicate easily.  They socialize easily.  They navigated a new city easily.  I saw few kids having meltdowns.  I saw nobody in corners crying, no shouting, no fights.  (This is not to say that these things didn’t happen, only that I didn’t observe them.)

For this reason, I think, LP culture is much more laid back.  They do not start things and end things precisely on time.  They are more disorganized and they are okay with that.  Their leaders do not need to know every single answer to every single question, because people overall are not so anxious to know everything.  They can let things flow more.  The conference was louder than other disability conferences I’ve attended.  It was assumed that the adults there could advocate for their needs and accommodations themselves. Transactions are simpler, quicker, because people do not need so much time to answer questions.  As an autistic adult, it was quite unsettling for me how casual they were about time, but I must remember that different cultures treat time differently.

I helped out a lot in the childcare room, and the differences that I saw there were astonishing.  No kids were off by themselves, stimming or playing quietly with electronics.  They were all interacting with each other, forming groups, alliances, friendships, naturally and easily.  They didn’t gravitate towards the adults, they gravitated towards the other kids.  Autistic kids often do gravitate towards adults because adults are safer than other kids, who are so often mean and hard to understand.  These kids also tended to be very articulate and speak really well, perhaps because they understand that as LP, people will treat them as younger than they are and so they need to compensate with verbal ability.  Autistic kids may speak really well in their minds, but our verbal abilities seldom reflect our intelligence.   (Oh, another similarity between autistics and LPs?  The children were all astonishingly beautiful.  I’m not kidding.  Autistic kids are gorgeous and so are dwarf kids.)

There were several instances at the conference where my autism caused communication difficulties.  For example, I asked one woman how old her children were.  Six and six, she said.  I asked if they were twins.  No, she said, confused, her daughter was Asian, and they were white.  Due to my faceblindness, I hadn’t noticed.  I also couldn’t always tell if a person was a LP or not, again, because I do not take in visual details very well.  The chaotic environment of the conference was stressful.  I could never have dealt with the uncertainty and general relaxed attitude of the participants if I were attending instead of volunteering.  But this wasn’t my culture; I was only visiting, so I tolerated it for the few hours I was there each day, then went home to relax.

Still, I do see the LPA as a model for some future autism conferences, and I do think we autistics can learn a lot from the LPA.  The primary thing is that the convention was, above all, a celebration of community.  It was not a place to get laws passed or advocacy work done; it was about socializing, about meeting friends old and new.  There were some business meetings but the general membership meeting only took up one morning, and the board of directors met the first weekend.  There were workshops, but they weren’t extensive. People were there to have fun, and it showed, with dance parties and pool parties and all kinds of fun events.  (Fun for their community, I mean.  I would have had a meltdown before I even approached a dance, which were, I am told, very loud and crowded and went on each night until the next morning.)

Another great thing that the LPA does is that they partner with doctors who are experts in dwarfism and dwarfism-related medical conditions.  These doctors fly in at their own expense and give lectures and see people for consultations.  People can’t get treatment, but they can get recommendations to bring back to their own doctors.  I think it would be awesome if we had top neurologists or speech therapists or communication specialists who did this at autism conferences.  There are some really, really great professionals out there but they are few and far between.  What if we could somehow gather them all in one place?  Wouldn’t that be something?

The LPA also promotes the formation of affinity groups, for example, groups for people with one type of dwarfism, groups for GLBT LP, groups for parents who adopted, regional groups, and so on.  They also had several workshops/sessions that were for LP’s only.  I’m not sure if the autistic community is quite ready for affinity groups at gatherings when we are still trying to come together as a community, but I love the idea of autistic-only spaces at conferences, and I would love to make them more of a reality.

The thing that I like best about the LPA is that there is never any question that LP’s are the experts on dwarfism.  Unfortunately, that attitude is just not that prevalent in the autism world just yet.  Whenever there was a gathering for parents, for example, there would be adult LP’s on hand to answer questions and guide parents through what it was like to live with dwarfism.  Non-LP parents certainly enjoyed meeting each other, but never did they raise their voices higher than those of LP’s.  Never did they disdain that someone with X type of dwarfism had nothing to teach them about their child with Y type.  Older LP’s were respected for what they had gone through and the things they had endured, in order to make things easier for the younger generation.  You rarely see this attitude in parents of autistic kids.

Interestingly enough, I met one LP who was also autistic, but ze was not interested in talking to me about advocacy or intersecting identities.  I know that there must be more.  I hope that in the future, little people and autistic people can come together more to learn from each other and build community.  From my brief sojourn there, the LPA have a lot more to teach us, and I, for one, am eager to learn.