Disability Day of Mourning, 2019

Every year, people with disabilities are murdered by their parents and caregivers.  Society–journalists, neighbors, police, judges, and juries–often excuse or even praise the murder.  Every year, the disability community, led by the Autistic Self Advocacy Network, comes together on March 1 to mourn those who have died, raise awareness, and call for justice to be served.

Disability Day of Mourning Vigil

Evangelical Lutheran Church of Chinook

March 1, 2019

Blessed be the God and Father of our Lord Jesus Christ, the source of all mercy and the God of all consolation, who comforts us in all our sorrows with the consolation we ourselves have received from God.

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Preparing the Way

Advent 2C, 2018, December 19, 2018

Malachi 3:1-4, Luke 1:68-69, Philippians 1:3-11, Luke 3:1-6

Preached by Pastor Anna C. Haugen, Chinook and Naselle Lutheran Churches, WA

May the words of my mouth and the meditations of my heart be acceptable in your sight, O Lord.

Grace and peace to you from God our Father, and the Lord Jesus Christ.

 

 

My Mom’s family is really outdoorsy, so when I was younger, the big yearly family event was a three-day backpacking trip into the woods on Labor Day weekend.  We’d all gather at the trailhead, strap on our packs, and go.  And by “all” I mean Granddad Huck, all the aunts and uncles, and all my cousins.  Down to babies in arms—one year, my aunt and uncle came along with their six month old baby, which added some unique challenges.  Everyone meant everyone … except Grandma Kitty, whose health was just not up to scrambling up and down narrow, twisty, up-and-down trails with several days worth of supplies on her back.  The rough terrain was too much of a barrier to her.  She stayed behind, at home by herself, while her husband and kids and grandkids went off together.  And it never occurred to me, at the time, to wonder how she felt about being left behind like that.  How she felt about not being able to do what everyone she loved was doing.  And it never occurred to me to ask if maybe we should change our traditional family event to something she could participate in.  When your brain and body are able to do pretty much anything you want to do, you don’t think very much about the people who have it harder.  Whose bodies and brains just don’t always work.  Who need help or accommodations to do things.  You just don’t tend to notice the barriers that keep some people out.

Now that I’m older, I notice these things more.  The more I learn about my autism, the more I realize I just can’t do some of the things other people do, or I can’t do them in the same way, or I can do them but it takes a lot more out of me than it does most people.  And I have friends with physical disabilities, chronic illness, and mental health challenges.  There are so many things I take for granted that they can’t do, and sometimes things they take for granted that I can’t do.  And our world is built for people who are able-bodied, people whose brains work on a normal model.  Even though we have the Americans with Disabilities Act, to require businesses and organizations to take the needs of disabled people into account, all too often people with disabilities are left out in the cold, on the outside looking in.  And most people don’t even notice.  And when we do notice, as a society, there are a lot of people who think things are fine the way they are.  That it’s unreasonable to expect people to do things differently so that all are welcome.

In our Gospel lesson, John the Baptist talks about the coming of the Lord.  And he quotes from the prophet Isaiah: “Prepare the way of the Lord, make his paths straight. Every valley shall be filled, and every mountain and hill shall be made low, and the crooked shall be made straight, and the rough ways made smooth; and all flesh shall see the salvation of God.”  Now, when the prophet Isaiah spoke those words, the Jewish people were captives in Babylon.  They had been enslaved and carried off and now lived almost a thousand miles from their homeland.  They dreamed of the day when they could return to Judea, but the road home was long, and treacherous, crossing deserts and mountains and wilderness.  It was an arduous journey in the days before modern highways and cars, one that only the young and healthy could successfully complete.  Isaiah’s words told them two things: first, that God would free them from their captivity and bring them home, and second, that God would make the journey as easy as possible, one with broad, flat roads that went straight to their destination.  A road that would be easy to travel, with as few barriers as possible.  No force on Earth in those days could have made a level, straight, flat road from Babylon to Jerusalem.  But God could.

For Isaiah, that’s what redemption looked like: a road home that anyone could travel easily.  No matter how infirm you were, no matter what you struggled with, God could and would redeem you out of the hand of the enemy and bring you safely home.  And when John the Baptist thought about what God’s kingdom coming would look like, when John the Baptist thought about God reaching into the world to redeem it, that’s what it looked like: God reaching into the world to make a path that anyone could travel.  All barriers removed.  All living things welcome.

And I wonder what barriers we face?  What are the things in our lives, in our communities, and in our world that prevent us from seeing and responding to God?  Even worse, what are the barriers we put up that prevent others from seeing and responding to God’s salvation?  Sometimes the barriers are easy to see: like churches that have steps but no elevators, so that only people who can climb stairs can attend.  But sometimes we don’t even notice the barriers.  For example, there are about 1 million deaf people in the US.  Almost none of them go to church, because churches with sign language interpreters or closed captioning are vanishingly rare, and even in churches like ours where everything is printed in the bulletin, the sermon generally isn’t.  And what about disabilities that are less visible?  Things that affect the brain, or behavior, or make people just a little bit different than what we think of as “normal”?  Our society—including all too many churches—are quick to judge.  I know a woman with a disabled child who stopped going to church because too many people disapproval of how her child behaved.  “I know Jesus loves me and my son,” she said, “but our church sure didn’t.”

Then there’s all the other barriers we put up.  Barriers based on race, on class, gender, sexuality, politics.  People like creating barriers.  We like dividing the world up into “us” and “them.”  And of course people like “us” are good, and people who are not like us can’t be trusted.  I think that’s what sin looks like, a lot of the time.  All people, every single human being who ever lived, was created by God in God’s own image.  Every single human being is beloved by God.  And Christ died to save every single human being who’s ever lived.  Yes, even the bad ones.  Yes, even the ones who reject him.  Our response doesn’t change the fact that God reached out to us, first, and continues to reach out, continues to act for the redemption and salvation of all the world.  No matter how many obstacles we create, as individuals and as a society, God is always at work to make the rough places level and the crooked straight.

We live in a world with a lot of barriers.  Physical barriers, like the ones I’ve been talking about, that keep disabled people from participating; but also barriers of prejudice, or ignorance, or just plain not caring about those who are different from us.  And sometimes we notice those barriers, but a lot of time we take them for granted.  We assume that, like the mountains and deserts and wilderness that separated the ancient captives from their homeland, they are simply facts of life that can’t be changed, only accepted.  But that’s not the way God created the world to work.  God created the world so that all people might have abundant life, so that all people might love one another and build communities together, communities in which no one is forgotten or left behind or excluded.  Communities in which all people might live in the light of God.  That’s the way God created us to be, and it is sin that has broken us apart and put barriers between us.  But you know what?  The Lord is coming.  Christ Jesus, who was born in a manger two thousand years ago, is coming again.  The Messiah, God-with-us, King of Kings, Lord of Lords, Prince of Peace.  He is coming.  And we’ve put up so many obstacles, between ourselves and between us and God.  So it’s time to get ready.   “Prepare the way of the Lord, make his paths straight. Every valley shall be filled, and every mountain and hill shall be made low, and the crooked shall be made straight, and the rough ways made smooth; and all flesh shall see the salvation of God.”

Amen

The People We Don’t See

Fourteenth Sunday After Pentecost/Lectionary 18C, August 21st, 2016

Jeremiah 1:4-10, Psalm 71:1-6, Hebrews 12:18-29, Luke 13:10-17

Preached by Pastor Anna C. Haugen, Augustana and Birka Lutheran Churches, Underwood, ND

 

May the words of my mouth, and the meditations of my heart, be acceptable in your sight, my rock and my redeemer.

Grace and peace to you from God our Father, and the Lord Jesus Christ.  Amen.

There are a lot of people in America today who don’t go to church, or go to church only rarely.  But, if you sort them all out by categories and rank them from highest church attendance to lowest church attendance, one group is squarely at the bottom, with the lowest church attendance of any demographic: people with disabilities.  Now, there are a lot of reasons for it—for one thing, even today most churches are not handicap accessible, or only barely qualify—but part of it is stories like our Gospel reading today, or at least the way we normally read them.

One of the reasons for this is obvious.  After all, Jesus may have healed this one woman crippled for eighteen years, but there are a lot of people out there today with disabilities that bad or worse, who’ve dealt with their condition for longer.  Why, many of them wonder, have they not received that healing?  Why have miracles happened for other people, but not for them?  We believe that God heals all ills, but sometimes—a lot of times—that healing does not happen in this life.  Instead, it will happen when Christ comes again and the dead are resurrected and all of creation is remade in the good, whole, sinless way it was meant to be.  And that’s great, it’s certainly better than nothing … but it doesn’t change the pain and suffering that people experience in the here and now.  And so people who suffer hear stories like this and ask, “why not me?” and turn away from a God they believe has failed them.

But he other reason is because our focus on miracles of healing means that we don’t really see them, or welcome them into the community.  Sure, we as a community just love to hear the inspirational stories about disability, the nice, neatly packaged things that make us feel all warm and fuzzy inside and carry messages we approve of, like “if they can do it, so can I!”  Or “the only disability is a bad attitude!”  As if thinking good thoughts at stairs will turn them into a ramp, or smiling will stop a seizure.  And the way we tell those inspirational stories, it’s all about us.  Our reactions, our inspiration, turning people with disabilities into mere objects to make us feel better about ourselves.  We don’t like to hear about the problems, the ordinary realities of getting through the day—especially not if learning about those problems might require us to change our thoughts and actions to accommodate their needs.  Worse, if their story doesn’t fit the inspirational pattern—if they haven’t been able to pray their disability away—many Christians will think it’s somehow their fault.  If they had stronger faith, a miracle would happen.  If they prayed more, or prayed the right thing, they’d be cured.  If, if, if.

One of the professors I studied with in seminary is legally blind.  He told a story about an encounter he once had with a faith healer, who asked to pray that his blindness might be cured.  The professor agreed.  And so the healer placed his hands on him and prayed.  Nothing happened.  Well, nothing happened to the professor; his sight was not changed.  But the healer grew upset as he tried and tried and tried to heal the blind, and failed.  Normally, he would have taken it as a sign of some failing on the part of the person he was trying to heal—their faith wasn’t strong enough, perhaps.  But he knew that the professor was a good man of deep and abiding faith.  In the end, the blind man ended up comforting and consoling the faith healer.  The faith healer had been so focused on the cure—on trying to make the miracle happen—that he couldn’t see anything else.  He couldn’t truly see the man he was trying to heal; he could only see his disability, and that only as something to be prayed away.

In some ways, he was like the Pharisee from our Gospel reading.  He didn’t see the woman who had been bent over for eighteen years.  He didn’t see her as she was; he only saw her as she fit into his ideas of what ought to be.  He looked at a woman praising God, and saw only a problem.  No work should be done on the Sabbath; healing was work; therefore, the Pharisee believed Jesus was wrong to heal her on the Sabbath and she was wrong to praise God for it.  She was a problem, because she was too visible—too many people saw her cured, too many people saw her rejoicing, and so too many people might be tempted to forget the Sabbath.  The Pharisee didn’t see her, he didn’t see her as a beloved child of God, a daughter of Abraham.  He looked at her and saw a problem.

But you know what?  I wonder if the Pharisee had ever truly seen her in the eighteen years she’d been bent over, either.  Eighteen years.  That’s a long time.  In all that time, had he ever gotten to know her?  Had he ever asked her if there was anything the synagogue could do to help her deal with the effects of her condition—and then really listened?  Had he ever asked her what would make the synagogue’s worship more accessible to her?  Had he ever asked her what support and help she needed to get through her daily life?  Had he ever asked her what she thought about her life?  Had he ever taken the time to make sure she was not excluded because of her differences?  Had he been willing to change things up so that she could be included in the community instead of left on the outside looking in?  Had he ever been a friend to her and her family?  Had he ever been there for her to lean on when things were difficult?  And when there had been times of rejoicing during those years she was bent over, had he ever been there to celebrate with her?  Or had he just ignored her, forgotten about her, except to pity her occasionally, and maybe toss a few coins her way in charity?  I think that if he had ever truly seen her before the miracle, if he had ever recognized her as a child of God and descendant of Abraham, he could not have responded to Jesus’ miracle by treating it as a problem.

Too often, we act like the Pharisee.  We don’t see people with disabilities, not really.  They’re problems to be solved.  Or, better yet, ignored.  If someone is disabled, and needs accommodations to help them get through the day and participate in society, how often do we think that it’s unreasonable to take the time to help?  How often do we discount their needs because they might be faking it?  How often do we look at them and assume we know more than they do about the realities of their lives?  How often do we look at people with disabilities, and see burdens to society instead of children of God?  There was a movie out this summer, Me Before You, that a lot of people absolutely loved.  It was a tearjerker, about a man who becomes disabled and chooses to kill himself, which the movie presents as a good and noble thing.  It’s the kind of thinking behind the assisted suicide movement, which wou1ld rather make it easier for people to kill themselves, instead of doing the hard work to allow people with disabilities to live full and meaningful lives, as part of the larger community.

And even if we avoid the Pharisee’s viewpoint, we as Christians act like the faith healer.  We see people with disabilities as problems to be solved, as things to inspire us and prove the goodness of God.  We see them as opportunities to do a good deed and bask in how nice we are, how faithful we are, instead of seeing them as fellow children of God to be included in God’s family.  We get so caught up in miracle stories and heartwarming narratives, that we have no idea what to do with the real people around us, many of whom never get that miracle in this life and whose lives are far too complicated to fit into that heartwarming Hallmark movie.  And so, even in church, where all people should be welcomed, people with disabilities are still left on the outside looking in.

This whole sermon, I’ve been saying “they” and “them.”  But the truth is, I have a disability; I’m autistic, which is a developmental disability, and I have anxiety, which is a psychological disorder.  Now, my anxiety is relatively mild, as clinical anxiety goes, and I happen to have a subtype of autism called Aspergers which means that when I am well-rested and my anxiety isn’t flaring up, and I’m in a known environment with no surprises, and I know the right social scripts for the occasion, I can pass for normal if I work hard enough.  My disability is often invisible.  It means that I’ve faced less discrimination and stigma than others have, and been able to do a lot of things that others can’t.  But the fact that I can often pass for normal—and thus let those around me forget that I’m different—doesn’t mean I don’t have a lot of extra challenges.  It doesn’t make me a better person or more worthy of being accepted by society than those whose disabilities are more visible.  And it certainly doesn’t mean that I am more of a child of God!  We are all God’s children, whether we have able bodies or disabled ones, whether our brains are neurotypical or not.  We all need community; we all need to love and be loved; we all need support, although some of those supports are more obvious than others.  And that community starts by seeing people—truly seeing us—not as problems or inspirations but as people and children of God.

Jesus saw the woman who had been bent over for eighteen years.  He knew her.  And when he saw her, he healed her.  We can’t work miracles of healing on cue like Jesus did; when they come, they come unexpectedly.  And there are some people with disabilities who don’t need healing; while I would gladly be healed of my anxiety, my autism is a part of who I am that I would never change.  But we can build communities where all of God’s children are known and welcome.  We can build communities where all people receive the support they need to live the full and abundant lives God promises to all his children.  May we learn to do so.

Amen.

The Healing They Didn’t Want

Fifth Sunday After Pentecost/Lectionary 12C, June 19th, 2016

1 Kings 19:1-15a, Psalm 42, Galatians 3:23-29, Luke 8:26-39

Preached by Pastor Anna C. Haugen, Augustana and Birka Lutheran Churches, Underwood, ND

 

May the words of my mouth, and the meditations of my heart, be acceptable in your sight, my rock and my redeemer.

Grace and peace to you from God our Father, and the Lord Jesus Christ.  Amen.

You know what’s interesting to me about our Gospel story?  There are lots of healings in the Gospels, and several other cases of Jesus or his followers casting out demons.  And some of those healings and such take place, as this one, in Gentile communities.  So it’s not the healing of the possessed man that catches my attention.  Nor is it the question of whether the man actually had a demon, or whether it was some form of mental illness that they didn’t understand in those days.  I’m not sure whether or not I believe in demons, but I do absolutely believe that if they exist, Jesus Christ can cast them out; and if it wasn’t a demon, well, Jesus Christ is absolutely capable of healing mental illness.  So while some people get passionate about that question, I’m not one of them.  And some people really feel for those pigs—either horrified that innocent animals were sacrificed, or upset about the financial loss to their owners.  But the people in the story didn’t seem to care about the financial loss, so why should I?

What interests me about this story is the reason the Gerasenes get upset.  They weren’t mad that their pigs had been killed.  They weren’t happy that the man was healed.  They were afraid because he was healed.  They didn’t like it!  You and I, we read this story, and we think, oh, wow, how wonderful!  But the people of the town—the ones who had known this guy all his life, his family and friends—they didn’t think it was wonderful.  They saw the man healed, and they were seized by great fear, and they asked Jesus to leave.  They didn’t want his healing touch among them.  They liked things the way they were, thank you very much.  And if that was a terrible life for the man possessed by a demon, well, they didn’t care.  They were quite willing to chain him down and keep him under guard all the time—and that couldn’t have been easy or cheap.  But that was fine.  They’d pay the cost, whatever it took, no matter how much it hurt him.  But have him healed?  No, that was a problem.  To see him in his right mind, wearing clothes, ready and able to be part of the community?  Uh-uh.  No.  That was frightening.  That, they did not want.  Or, at least, they might have said they wanted it, until they actually saw it right in front of their eyes.

The Gerasene reaction doesn’t surprise me, because I know how the mentally ill and disabled are treated in our own society today.  The most popular option, by far, for how to deal with those who cannot take care of themselves for whatever reason is to lock them up and throw away the key.  We’re kinder and gentler than the Gerasenes were; we lock people up in facilities with comfortable furniture and padded rooms and high doses of sedatives and antipsychotics, instead of binding them with chains and shackles and consigning them to live naked in the wilderness.  But given options that will improve their health and quality of life, we generally choose not to use them, just as the Gerasenes sent Jesus away.  Every study ever done shows that community-based care for the mentally ill and disabled—whether home health, group homes, or other alternative—is both better for people with mental illness and disabilities, and cheaper for the community.  And yet, the only kind of care a lot of people want to fund is institutions that lock people away from the community.  It’s the same with education.  Putting children with disabilities in mainstream classrooms with appropriate support and accommodation so they can succeed is usually better for them.  They learn more, both life skills and educationally, than if they’re off by themselves in a Special Ed classroom.  And the other kids learn to be kind to those who are different.  But there is strong resistance to programs that do that.  Children with disabilities, adults with disabilities, the mentally ill.  We’d rather lock them up away from the rest of the community than have them in our midst.  We’ll pity them and use their stories for our own inspiration, but we don’t actually want to have to see them and deal with the reality of their lives on a daily basis.

I think it’s because we get uncomfortable with things that are different, especially things that remind us how much of our lives isn’t due to our own hard work and what we deserve, but rather to things we can’t control.  We want things to be normal.  We want people to be normal, too.  Because normal is easy.  Normal requires no thought, no special effort.  When everything is “normal,” we can go through our lives quite comfortably without ever once asking any questions which might make us change our minds, hearts, or actions.  But when we allow people who are different into our midst, we have to accommodate their needs, and sometimes change the way we do things.  We have to build relationships with them that might change how we see them, and how we see ourselves.  It’s a lot easier—and a lot safer—to not include them.  To lock them away, chain them up, put them in special programs so we never have to see them or deal with the reality of their lives.

In Gerasa, they chained up the man with a demon.  I don’t know how dangerous the demon was to them—maybe they had no choice.  But I do know that in today’s society, we lock up the mentally ill because we think they’re dangerous, and every time there’s a mass shooting the first question we ask is “were they mentally ill”? This is despite the fact that virtually all mass shootings were committed by men who were perfectly sane, and that the mentally ill are far more likely to be victims of violence than commit it.  We are far more dangerous to them than they are to us … and they are the ones who get locked up.  As a culture, we would rather make mental illness a crime than provide the resources and support they need to live decent lives.

So Jesus healed the man with a demon.  His community had done everything they could to exclude and confine him, and Jesus freed him.  Jesus freed him from the demon, and in doing so he got rid of any justification for them to mistreat that man.  And when the Gerasenes arrived they saw the man healed, clean, dressed, looking “normal,” ready to rejoin the community.  And that made them uncomfortable.  That made them afraid.  That made them want to reject Jesus, send him as far away as he could get.

They didn’t want the man healed, because then they’d have to include him.  This man they’ve chained up for years, this many they drove out of their midst, this man they did terrible things to in the name of protecting themselves … now they’ve got to face him.  They’ve got to deal with him.  Now they have to face what they’ve been doing to him all this time, and ask themselves if it was really necessary or if it was just easier for them to make him a convenient scapegoat and shove him away.  Their lives were comfortable, with him possessed.  Nice.  Predictable.  And now that’s not true anymore.  They would rather have easy certainties and normality than healing.  They would rather have easy certainties and normality than the salvation and life that come through Jesus.  If loving Jesus and hearing his word means accepting someone they have excluded?  Goodbye, Jesus, don’t let the door hit you on the butt on the way out.  And it was probably made worse by the fact that that man—the man they’d excluded and hut, the man they wanted to keep possessed and in chains—was the man Jesus sent to proclaim the Good News to them.    It wasn’t just, oh, sure, he’s not possessed anymore, so he can sit quietly in the back as long as he’s not too loud so we can continue to ignore him.  No, that man had a message to preach, about what he had experienced.  And it was a message they would rather not hear.

How often do we do the same thing?  How often do we blame and exclude those who are different because they make us uncomfortable?  How often do we as a community choose to exclude and demonize people rather than giving them the support and accommodations they need to be able to live whole and happy lives?  I know that for mental illness, most people in North Dakota suffer without ever getting help, and if they do get help, it’s usually not enough.  We don’t fund mental health; we don’t work to make sure we have enough counselors for the size of the population, we don’t make sure our teachers have enough training to spot and deal with problems before a child’s course is set.  And then people turn to drugs and alcohol because it’s the only way they know how to cope.  It’s easier to sit here and shake our heads and wag our fingers, and call the cops when things get out of hand, than it is to provide services and support that might actually bring some healing.

We worship a God who heals.  We worship a God who casts out demons.  We worship a God who comes to bring life, abundant life, abundant life for all—especially those we’d rather ignore or exclude or forget about.  The temptation is always to be like the Gerasenes, closing our eyes to their needs and preferring normality to the possibility of healing and wholeness.  May we, instead, be God’s hands and feet in the world, working towards healing and wholeness for all people.

Amen.

On community, society, and self-definition: An Autistic Perspective

Yesterday, in a private (but large) Facebook group I belong to, the mother of an autistic child “got up on her soapbox” to explain that we should never call anyone “autistic,” but rather say that they “have autism.”  Because, she said, “Autism is not his primary identifier. The same is true for all who live with autism.”

This is MANIFESTLY, COMPLETELY, TOTALLY UNTRUE.  The two largest autistic advocacy groups in the US–that is, the two largest run by autistics themselves, rather than by parents of “children with autism”–are the Autistic Self-Advocacy Network and the Autism Women’s Network.  The communities of autistics that form both groups STRONGLY prefer identity-first language, that is, “autistic” instead of “person with autism.”  Many autistics (including myself) greatly prefer identity-first language, for a variety of reasons; the ASAN website has a nice post on why, and quite a number of us (although not myself) have blogged about it.

So I got up on my soapbox, and commented to the Facebook post, explaining why I and many other autistics strongly prefer identity-first instead of person-first language.  She and another lady tried to argue me out of it, or at least claim that by doing so I was denying other people the right to be called what they preferred.  When they couldn’t get me to back down and admit I was wrong, the OP said this:  “To be honest, it makes me feel sad that you self-identify primarily as autistic.…”

It was like a punch to the gut.  Half an hour later, my hands were still trembling; an hour later, I was still occasionally fighting back tears.  Let me explain why … and why the OP thought she could speak for autistics in the first place.

(The rest of this post is not about her; I know very little about her, beyond my interactions with her in the comments on that post, and I’m not trying to claim or imply that she’s like some of the people I talk about.  This post is about the experiences in my life that made her words strike such a strong chord in me.)

There are two autism communities in the US.  One, by far the most vocal, is made up primarily of therapists, parents, and teachers.  They’re the ones who run Autism Speaks, which is probably the only autism “charity” you’ve ever heard of.  (Here’s a good rundown of why AS is pretty terrible.)  This community started back in the 40s and 50s when Kanner et al were first diagnosing all these “abnormal” children, spinning all kinds of theories about what was wrong with them and experimenting with how to make them “normal” with very little (sometimes no) ethical oversight.  Then Lovaas came along, the father of behaviorism, claiming that autistics weren’t really people, just people-shaped animals, and that only when we became more “normal” would we really be people.  The autism community was joined by parents eager to make their child “normal,” or as “normal” as possible (without ever stopping to consider whether there might be a difference between “normal” and “healthy”).

Today its leading lights are psychologists who talk about our “lack of emotions” and say we’re wrong when we insist we have them, therapists who advocate 40+ hours a week of therapy designed to force us into compliance, and parents who blog about all the worst things their child does and how terrible autism is, in order to get sympathy and money.  It rallies around Autism Speaks, which spreads lies about autism “stealing your child” (we’re not gone, were here–we’re just different) and “destroying marriages” (studies in both Canada and the US have shown that the divorce rate is no higher for parents of autistic kids than for any other married couple).  Most of the parents and therapists aren’t bad people; they’ve just … never questioned any of these basic assumptions.  And there’s only a place for someone who actually has autism in this community if they completely agree with all of it.  (Which is why AS can occasionally get an autistic person to work with them on a high level, such as John Eldar Robinson, but can’t keep them.)  This is the autism community that largely shapes public discourse about autism, controls what programs and services are available to autistics and their families, and insists on person-first language (“person with/having autism”).

Let me tell you what life is like as an autistic in a world where this community shapes the public dialogue and perception.  It’s pitying looks, because obviously, autism has destroyed my life (it hasn’t) and I must be miserable and lonely (I’m not).  It’s listening to people explain why they absolutely won’t vaccinate their kids, because in a choice between their child (and others) dying of a preventable disease or becoming autistic, they would rather their child died.  (Think about it.  They would literally rather their child died.  People can and do die of things like rubella, mumps, polio, and other vaccine-preventable diseases.  Vaccines don’t cause autism, this has been proven many times over, but they believe it does and, believing that, they would rather risk their child dying than risk them turning out like me or my dad or my baby brother.)

It’s taking care of my baby brother when he was nonverbal or barely-verbal, and hearing people talk about what a shame it was and what a tragedy it was and what a burden he was, right next to us, as if him not talking meant he couldn’t hear.   I’m lucky; our parents would never have said anything like that to either of us.  I have too many autistic friends whose parents would say the same things, and then say, “of course I love my child, I just don’t love their autism.”  Leaving them, at age three and seven and ten and fifteen, wondering what about themselves was so terrible even their own mother and father couldn’t love them.

It’s years spent terrified of people finding out, because I knew how they treated and talked about my baby brother.  Years of feeling like I was drowning, years of social anxiety building up and up, years spent without reaching for help because I was afraid of being labelled and knew how cruel and thoughtless the world can be.  (But I don’t for a second regret “coming out” with my disability.  Yes, some people have been really nasty or condescending about it … but let’s be real, most of them would have been able to tell I was different/weird anyway, and would still have treated me badly because of it.  What coming out really did was open up the possibility of honesty and real connection with people willing to learn and hear my story.)

It’s hearing people talk about how they’d never let their daughter date an autistic boy, because everyone knows autistics have no emotions and so couldn’t really love her, would just be using her for sex.  (That’s actually the good version.  Once, it was because “all autistics are sociopaths.”)

It’s being only listened to when I talk about the bad parts of autism.  Problems, sure, everyone wants to hear about my struggles (and how “inspiring” I am for overcoming them).  But dare to talk about anything positive outside a select community, and I get jumped on.  Everything bad about me must be caused by my autism; anything good about me must be completely unrelated.  And anything that is neither good nor bad, merely different, must be bad if it’s related to my autism.  Example: I struggle with executive dysfunction, and get really focused on things such that I have trouble stopping doing one thing and starting another.  If that autistic focus prevents me from doing things that are more important, it’s terrible how my autism hinders me.  If that autistic focus helps me do a lot of work in a short time, however, it’s wonderful how much I have accomplished despite my autism!  Because nothing good can ever come from autism.

I also have very sensitive hearing.  This makes some things (events in large, echoing spaces, for example) very difficult, but it also makes me very musical.  If my auditory issues give me problems at a high school basketball game, isn’t autism terrible.  But if I dare to talk about how my autistic sensory issues with hearing gives me pleasure in listening to music or has made singing and playing instruments easier, well, there’s a good chance any autism parent, therapist, or teacher in the vicinity is going to jump all over me.  Because how dare I suggest that autism has any positives.

It’s people not believing me when I tell them how my autism affects me.  You see, I’m “high functioning,” which means that in many situation I can pass for “normal.”  (Basically, it means I’m a decent actress, because that’s what passing for “normal” is–acting.)  Therefore, if ever I slip and do or say something that isn’t “normal,” it’s because I’m deliberately trying to be a jerk.  If I’m trying my absolute best to act “normal” and still slip up, well, I just need to try harder.  If there are things I can’t do because I’m close to a meltdown, it’s because I’m being “lazy.”  And if I try to explain (difficult, when you’re on the edge of a meltdown), “Well, everyone’s tired, Anna, not just you.  It’s not that hard.”  (It’s not hard for you.  But my brain works differently, and right now, it’s impossible for me.)  I’m “high-functioning,” so to a lot of people I shouldn’t need any accommodations or special understanding.

It’s society assuming that I’m always the one who needs to change if there is an incompatibility (however slight) between me and “normal.”  If there is a conflict between my deepest needs and someone else’s convenience, well.  Obviously, expecting them to accommodate me is completely unreasonable.  (But if there’s something they want to do for me, something that will make them feel good about helping the poor autistic, I must always let them do it and be grateful for it.  Even if it’s not anything I need or want, even if it’s something that actually causes me problems.  Because they’re being Nice, so it would be offensive if I don’t fall all over myself with gratitude.)

It’s parents of autistic kids being thrilled to meet me–at first.  They’re so happy, I give them hope that their kid will be “normal,” they hope their kid turns out just like me!  Except that a lot of the time, that only lasts as long as I’m the “good” autistic who agrees with everything they think, say, and do.  If I don’t, if I suggest things they don’t want to hear or offer an explanation of their child’s behavior that doesn’t fit their models, well, obviously I can’t know what I’m talking about, because I’m nothing like their child.  (Maybe–after all, autism is a fairly wide and deep spectrum, more like a color wheel than a straight line.  But if the parents are neurotypical, I bet I’m still a heck of a lot more like their child than they are.  Also: are you different as an adult than you were as a child?  Yes?  Well!  Guess what!  So am I!)

It’s listening to all the autistics I know who had (and many still have) worse childhoods and lives than mine, filled with well-meaning parents and therapists so focused on “helping” them be “normal” that they couldn’t see the trauma they were causing, the stress, the anxiety, the scars that still hobble them in many cases.  It’s hearing how so many of their parents still claim that they were doing the right thing, and their children should be grateful to them for getting that dehumanizing therapy.  (Note: not all therapy is bad, in fact there are a lot of things that therapy can help autistics with.  But unfortunately, there is SO MUCH autism therapy out there that is damaging rather than helpful, and while things are getting better, you still have to be VERY careful.  Particularly with anything labelled “behavioral,” ABA, or IBI.  My autism resource list has a whole section on this.)

It’s seeing scientific studies come out every six months or so with “revolutionary new findings about autism,” which is really only confirming something actual autistics have been trying to tell people for the last thirty years.  There’s never any acknowledgment of this.  We get belittled and pooh-poohed for trying to say it; they get glowing reviews.

It’s seeing the news every time the parent of an autistic kid murders their child because “raising a child who has autism is so hard.”  And seeing news outlets and talk shows fall all over themselves to exonerate the murderer and blame the victim for their own death. (Parents murder autistic children in the US at an average rate of about one every month.  In the past five years, over 180 people with disabilities have been murdered by parents and caregivers, with autistics making up a large percentage of the total.)  (I use person-first language here because while some disability communities, notably the Deaf community and Autistic community, prefer identity-first language, most other groups prefer person-first language, making it best when speaking of the larger whole.)

It’s steeling myself whenever I see an article or ad or blog post or book about autism, because chances are very good it’s going to be terrible and hurtful.  It’s probably spreading terrible stereotypes.  If not, good chance it includes at least some mention of all the terrible things that society, parents, therapists, and teachers can do to autistic kids.

It’s steeling myself every time there’s a mass shooting, because long before any facts are known, the media will be throwing around theories about the killer being mentally ill and/or autistic–this despite the fact that there has never been a mass shooting committed by an autistic, and very few mass shootings are committed by anyone with any mental illness or intellectual disability.  We are far more likely to be injured or murdered by “normal,” able-bodied folks than vice versa.  But it’s  easier to demonize us than to ask what it is about our society that makes otherwise mentally-stable young men decide to take their frustrations out by shooting up schools, churches, and other public places.

It’s knowing that most autistic-coded characters on TV are like Sheldon from the Big Bang theory–where it’s implied but never stated that they are on the autism spectrum, so half the time the show can occasionally toy with something resembling understanding, while half the time implying that it’s not a different neurology, he’s just a selfish jerk.  And all the time playing it for laughs.  (“Oh! You must love Sheldon Cooper, then,” people say when they find out I’m autistic.  No.  I don’t.  He makes me cringe.  Some autistics do like him, I’m not saying he’s a bad character or that there are no autistics who are selfish jerks.  I’m just saying, when my choices for seeing people like me on TV are him and the occasional Rain Man-esque autistic savant …. no thank you.)

It’s telling people that I’m autistic, and have them lecture me about what autism is like because their father’s brother’s nephew’s cousin’s former roommate’s kid is autistic and they met them for five minutes at a birthday party once, and then later read an article about autism, so obviously they know more than me.

Some of the biggest autism challenges in my life aren’t caused by autism itself, they’re caused by the way society thinks about and deals with autistics.  Especially the “autism society” that is made up of “experts” and parents, who only want what’s best for us … but who assume that only they can know what “best” is, and that obviously they know our minds and bodies better than we do ourselves.  So we’re welcome only as long as we agree with them and do what they say.  We’re welcome only as long as autism is only ever bad, and they’re heroes for “helping” us.

Which is why another autism society exists.  Autistic society.  Made up by and for people who actually are autistic.  (You can find us at ASAN, AWN, a large variety of blogs, and on most social media sites–look for #actuallyautistic and variations thereof.)  Our motto is “Nothing About Us Without Us.”  (Also, “Autism Speaks Doesn’t Speak For Me.”)

And most of that society starts with saying NO.

NO.  You do not get to tell us you know better than we do about our own brains and bodies.

NO.  You do not get to speak for us or tell us how we should think about ourselves.

NO.  You do not get to make us feel ashamed of who we are.

NO.  You do not get to pity us.

NO.  You do not get to say our lives are terrible and we’d be better off dead.

NO.  You do not get to exclude us from conversations about our own lives.

NO.  You do not get to decide what “normal” is, and that “normal” is always the ultimate goal.  (Healthy and happy are much better ones.)

NO.  You do not get to chop off the bad bits of our lives and say “this is autism.”

NO.  You do not get to declare that some of the good bits of are lives are bad just because you can’t separate them from our autism.

NO.  You do not get to decide that obviously, any good part of our lives is unrelated to our autism.

NO.  You do not get to decide that anything inconvenient to you is bad.

NO.  You do not get to demonize our condition to get sympathy and money and turn around and say you’re doing it for our own good.

NO.  You do not get to divide us up with the catch-22 of “high functioning” vs. “low functioning.”

NO.  You do not get to decide what accommodations I need, and when I need them.

NO.  You do not get to decide that my life is a tragedy because I’m autistic.

NO.  You do not get to control what language we use about ourselves or how we see ourselves.

NO.  My autism is not about you.  Your child’s autism is not about the problems it causes you and what an awesome parent you are for dealing with it.  Your patient’s autism is not about how great a therapist you are for changing their behavior and personality into something you like better.

NO.  You do not get to decide we’re unfeeling–or even sociopaths–because the body language and facial expressions and tone of voice and words we use to express our emotions are different than yours.

NO.  You do not get to make us ashamed of who we are.  And you do not get to be condescending and superior about trying.

I am autistic.  I am not ashamed, I am proud.  And I am not alone.  We are not alone.  We are the autistic community, and we speak with many voices.  Our lives are our own.  We define ourselves.  We are fearfully and wonderfully made by a creator who made us different, but not less.

For it was you who formed my inward parts;
   you knit me together in my mother’s womb.
I praise you, for I am fearfully and wonderfully made.
   Wonderful are your works;
that I know very well.–Psalm 139:13-14

Day of Mourning

By Anna C. Haugen.  This article first appeared in Gather: The Magazine of Women of the ELCA in the March 2016 issue.  It was written in November of 2015.  For more information on Disability Day of Mourning, see the Autistic Self-Advocacy Network’s Anti-Filicide Toolkit.

As I write this, I have just heard the news that a woman in Georgia has murdered her autistic son, Dustin, and shot herself. It sits in my gut like lead. In the last five years, more than 90 disabled people in the U.S. (many of them autistic) have been murdered by parents or caregivers. More than 90 people betrayed by those who should have protected them.

I sit in the land of death. I close my eyes and pray for young Dustin, and for Tracey, Melissa, Daniel and all those who went before him. I trust they are safe in God’s arms. It’s cold comfort.

I don’t have to turn on the TV to know what some are saying. It’s always the same. “He was such a burden.” “You don’t know what it’s like to be the parent of an autistic child.” “Can you really blame her?” “He was severely disabled—what kind of life would that be, anyway?” It will probably come out, eventually, that his mother abused Dustin long before she murdered him, taking her frustrations out on him (and worsening his condition in the process). If so, few will care.

I’m autistic, and so is my baby brother. I can’t help thinking that if our parents shared that mindset, that news story could have been us. When I share this, people try to comfort me: “Oh, you’re so much higher-functioning. You’d never have to worry about that!” As if the fact that I look more “normal” means I’m more worthy of life, of love. Yes, autism brings challenges. Yes, it has a profound impact on our lives, and sometimes limits what we can do. But there is also joy and happiness and great ability—in spite of our autism and because of it. I am fearfully and wonderfully made by a Creator who made me different, but not less. So was Dustin.

Many people can’t see that. And so, in this sinful, broken world, they take their fear, their hate, their frustration and their grief out on the vulnerable. Sometimes it’s “just” abuse. Sometimes it’s murder. We need better support systems, but more than that, we need to realize that disabled people are people—not burdens or tragedies. Every March 1st, the autistic community joins other disabled groups in a Day of Mourning. We hold vigils. We remember the names and stories of those who have died. We speak out against a society that excuses the murderers and blames the victims. We cry.

I sit in the land of death, hearing stories about people like me being abused and killed. I wait for the morning, for the light of new life coming from the empty tomb. I wait for the day Christ comes back and all the dead are raised—including Dustin—and we live in a world free from abuse and violence.

I live in the land of death, but I hope for new life.