Anxiety and Mental Health Accessibility

I wasn’t sure if I would write about this or not. I have shared many deeply personal and private things with my readers, but this is hard and humiliating and I’m not even sure why this is harder to share, but it is. So please be gentle.

I have anxiety so bad and have had it for so long that I didn’t even realize how anxious my baseline state is until the first time I smoked marijuana and experienced what it’s like to feel peaceful. My anxiety makes every day a struggle. Even my good days are riddled with anxiety. As I said, it is my baseline state.

I should add that therapy makes me more anxious. Every so often I struggle so much that I think about trying therapy again, despite knowing how hard it is on me. I get hopeful and decide to gamble on the off chance that this will be the time that I finally find a therapist who gets me and has the tools and training to make a difference in my life.

This morning was one of those times.

I saw a notice for a table at a local library branch. For two hours, a local “behavioral health” (that phrase is so creepy) organization would have a table available for people, “to learn more or to get information about ALL services [agency] offers.”

That sounded promising, so I went.

The entrance to the library was a sensory nightmare. I had to get past a food box hand-out at the door. I am glad someone was feeding people, but it made for a confusing sensory nightmare plus a big audience of strangers watching me trying to get information about a sensitive topic.

Inside, I struggled to make visual sense of the room. There was a table with a person at it, but no sign identifying who they were or why they were there. It used up just about my last drop of processing to get to the table.

So there I was, fidgeting, rocking, avoiding eye contact, having a really hard time of it and pretty sure it showed. “Is this the [agency] table?”

“Yes.” And they waited for me to say more.

“It said you would have information about your services?”

“What service do you need?”

Now … some of you are Autistic and some of you are parents to Autistics (and some of you are both.) So you know what I’m about to say.

I couldn’t make the words. And even if I could, I was not comfortable telling my troubles to a stranger in a very public setting.

I see now, at least somewhat, what they meant and what I was supposed to say, but in the moment, it was too much.

“What do you have?”

They rattled off a string of words faster than I could process them all– who knows? There might have been a better fit in there for me, but I managed to latch on to “mental health services.”

“Those. Mental health.”

They picked up a pamphlet, “you can call this number, and…”

“I don’t do phone,” I blurted. This should really be an expected response from someone with anxiety issues, right?

“Is there just a pamphlet I could read or something?” By now, I was hitting the end of my “spoons.”

They tried to hand me the same pamphlet. I looked at it. It was for alcoholics and addicts.

“I’m not an alcoholic,” I said, feeling lost and helpless and pretty certain the wizard had nothing in his black bag for me.

“Yes, but this phone number …”

I was sunk. It was back to the phone call. If I could have made a phone call, I would have done it already, not come to a table hoping to get information and answers about how [agency] might help me.

“Thank you,” and I took off out the door, double time, to go sit in my van where I shook and cried, getting myself together enough to drive away.

What was the point of putting someone on that table who didn’t know how to talk to anxious people and didn’t know how to educate a mental health care consumer about their options without being stressful and triggering?

How many anxious people are not getting helped because access to services is blocked by the lack of accommodation for the very issue that brings them seeking services in the first place?

I’m back to business as usual: coping with anxiety by hiding, leaving places, shaking and trembling, stimming, chewing on things, running away, having panic attacks, and smoking marijuana whenever I can afford it and get away with it (please bring medical marijuana to all fifty states! Better yet, bring medical marijuana *and* recreational marijuana so those who don’t have the money or coping skills to go through the medical system can still have safe, legal access to a medicine they know helps them.)

There is something really wrong when helping agencies become access barriers to the people who most need their services.

I tell myself it’s just as well: any agency that can’t even advise me without sending me into a panic is not going to be able to help me anyway. And therapy that is not helpful to me is often actively harmful to me.

But getting help with my anxiety was still a nice dream while it lasted.

My point here? If you are in a position to help or serve a vulnerable population, do your homework. Destroy the barriers your potential clients face in seeking your help. Be sensitive to the needs of your target population and don’t leave them high and dry because they are too anxious to make the right words and too put off by your continuing to offer things they’ve already made clear that they can’t access.

That’s all. Vulnerable populations trip over our own feet enough as it is. We don’t need to trip over yours, too.

Dear Young Autistic – Anger

a young person with hands on the sides of their head and screaming in angerDear Young Autistic,

I am like you. I am Autistic. Now I am a middle-aged Autistic (I’m probably older than your parents) but I was once a young Autistic like you are now.

One of my biggest struggles was (and is) with anger. People have commented many times over the years about my anger. You might be angry, too? People around you might talk about your anger to you or to each other where you can hear them. Or maybe people don’t talk much about your anger because you’ve got ways to push it down and hide it from everyone. If you think you aren’t angry at all, check to make sure you didn’t hide it so well you can’t see it yourself.

Why was I an angry young Autistic? I felt stuck in a world I never chose and couldn’t understand. There were many things in life that were easy for me to excel at — often things others found difficult, like playing the piano, solving logic puzzles, quickly memorizing long poems and plays, learning foreign languages. But everything in life that required me to work and play with other people was out of my reach.

I was angry because people would see how hard it was for me to try to fit into the world of people and they would laugh at me, call me names, tease me, exclude me, even hit and hurt me sometimes. I learned early that everyone talks to kids about how important being good at academics is and almost no one talks to kids about how important understanding humans is. But it turns out that understanding people is more important for success in the world of people than understanding academic subjects is.

I was angry because the world was so frustrating and exhausting. I was stressed out, worn out, burnt out, cast out.

My anger got me in a lot of trouble. My math teacher called me argumentative. My English teacher called me overly reactive. My parents said I was bringing trouble on myself by showing my anger because as soon as the other kids saw that they could make me mad, they had won. “Won what?” I wondered. Was it really a game to the other kids? Some kind of contest? What sort of cruel game is it to single out a classmate who is struggling and suffering and burden them with taunts and blows? Who “won” when I retaliated in anger and ended up being the only one punished for an experience that was designed from the beginning to punish me in every way possible?

I want you to know that I understand. The world is completely unfair and there is so much that is genuinely worth getting angry about. I know you have been worn down by your anger and by the world’s reactions to it, but I want you to know that you should never feel ashamed of your anger or lesser for having a hard time controlling it. It is logical to be angry when you are stuck in a confusing, often violent world, tormented every day, forced to waste so much of your energy trying to hide your very understandable anger, punished for things you can’t help.

I also want you to hold on to hope. I am decades older than you and I am still angry. I am very, very angry. Sometimes the only word for it is furious. But I get better and better all the time at channeling that anger into producing things — writing, art, dance, music — that I value and that others (usually) do not want to harm me or shame me for producing.

We are Autistic and that means that we have our own ways of growing and changing over time. You will learn to cope. You will learn to manage your intense feelings more and more every day. It will never be perfect; we will never be Mr. Spock. But it gets better; it gets easier.

When I was young, I bit people. The last time I remember biting someone, I was 14. I would still bite someone now if they were attacking me and I needed to save my life or someone else’s, but I haven’t bitten anyone in anger in 35 years. That’s a victory. I used to hit people with hard things and I stopped that, too. I no longer hit, bite, scratch, or kick out of anger, though I would do all these things and more if I were being physically attacked. That is what I have been able to control: responding with physical violence to those who tease and torment me.

Yes, I still get teased and tormented as an adult. But now I am (usually) able to walk away from that person and have nothing to do with them. I know school can be hard. Hang in there! It seems like it will be forever, but soon there will come a day when you get to make more of your own choices. Soon you will get more choice about who you spend time around. Soon you will be allowed to avoid so many of the people, places, things, and words that make you so angry right now.

In the meantime, don’t let bullies and anger distract you from academics. Learn everything you can. Specialize in knowing about the things you love. Your knowledge and the use you put it to will be what lifts you out of the places you feel stuck in now. Learn breathing techniques. Consider studying meditation. Find a strength inside yourself, even if you think it isn’t there. It is. And while emotions rage through you like seaside storms right now, trust that you can and will find calmer seas as you age.

With autism, we get a great gift. Those kids around you will grow and change but somewhere in their mid-twenties they will hit a point where changes are slow and small. They may seem ahead of the game right now because they had all kinds of emotional growth spurts early in life while you were still working on getting your bearings. But we Autistics grow and develop throughout our lifespan. No, you won’t see much in the scientific literature about that, but I know lots of Autistics my age and older and I feel very confident in telling you that you will continue to change and grow in your thirties, forties, fifties, sixties, and beyond — as long as you live. Take a moment to think about how marvelous that is, what a treat, what a privilege.

You will find it easier and easier to remain calm, saving your anger for those times when you need its emotional jetfuel and not wasting it on automatically reacting to jerks. Those jerks will be running the same tired emotional-social-developmental treadmill for the rest of their lives while you will be ever reaching toward new adventures. Don’t be ashamed when they make you angry. If not now, one day soon you will come to pity them.

 

Working, Access, Disability, Inclusion, and Internalized Ableism

When I’m not working with the public, I start telling myself this story inside my head about how I’m “disabled, but not really disabled, you know?” Right, that story. Internalized ableism rears its ugly head again.

And then, just as I’ve gotten myself talked into the notion that “the last 20-something years of living on SSI have just been a sweet scam and how on earth was it so easy to get on that, anyway?” … then I try working again.

Like right now.

A happy confluence allowed me to start driving Uber in the town where I was hiding from winter weather. My car is new enough and in good enough shape, I have a smart phone (although Uber will get you a smart phone, they are that desperate for drivers), I love to drive (I mean I love to drive the way Clay Marzo loves to surf. I have put over 22,000 miles on my car in the last year. I really, really love to drive. It soothes me.)

So I’m all, “I can linger here and pay down my debt as I drive Uber. What magnificence.” And the first week was really great, because I was stoked enough to drive several 8 hour shifts in my first week, which was also a really busy week because I drove my first day on St. Patrick’s Day.

The fact that I survived a three-day drinking holiday in a college town fueled those thoughts I always carry around with me about how I could really work, all the time, every day, and be awesome and stalwart and stoic and shoulder to the wheel because I’m “disabled, but not really disabled, you know?”

And then reality hit. It got harder and harder to go to work and stay at work. If this were a job for someone else, I’d be fired by now and it’s only been three weeks. The only reason I am still capable of driving Uber is that I have no set hours and can turn my cab on and off as much as I need. Even with that, I hit a situation last week where I ended up needing to put some unruly people out of my car and work got even harder afterwards.

Just like Clay Marzo can surf all day long but can’t handle the people-aspects of competition surfing, I can drive like nobody’s business (“I’m an excellent driver.” – Rainman) but can’t handle the people-aspects of driving a ridesharing/cab service.

I’m still driving. For now.  I need to pay down some debt I’ve amassed that’s got me painted into a financial corner at the moment. And since it turns out that I have to stay in town to fight to get health coverage, it makes sense to keep driving for a while, as I can, keeping a close eye on my total income to keep from losing my disability benefits (though they’re not currently in danger, my income is turning out to be so slow.)

I have to protect my SSI because it’s so clear now that I could not survive on working for a living — my income from Uber quickly sank to a point lower than what I’m recieving on disability (which, itself, is 20% below the poverty threshold.) I’m pulling down about a quarter what I did that first week, even though business is every bit as steady as that first weekend. Uber can’t keep enough drivers, so I’m constantly on two runs at once all night long. There is more work out there than I could do. But I am still unable to sustainably support myself by working.

Thing is, I find my endurance waning. If all I did all night was drive around where my gps tells me, I could work the legal limit of 12 hours a day, no problem.

But I am driving *people* around. And that means interacting with people. And it sometimes means grappling with conflict. And it’s really hard. And draining. And did I mention hard? Hard and draining.

I know everyone’s work is hard and draining. But I’ve also watched what everyone else can sustain long term and compared it to what I can do when I’m trying so hard I make myself ill. This is how I figured out that I’m among that group of people for whom work, if even possible, is far more hard and draining than work is for abled people.

I’ve often thought the ideal job for me might be forest ranger on permanent fire watch. Or maybe lighthouse keeper. Or that guy who gets left behind on Mars. You know, pretty much any job that doesn’t include humans other than just me. Me and some work to be done sounds like a really satisfying day. Me plus other humans and some work to be done? Rarely ends well.

And the working world is so unfair, because I am the one who has to pay the price for the access lack and I am the one who gets blamed for access fail because everything’s on my shoulders all the time.

Oh, and I’m starting to remember that I actually *am* that disabled and there’s no shame in it; it is what it is. And it’s not about trying harder, because I’m already trying harder than anyone should ever be required to. It’s about access and the lack thereof. And about not letting internalized ableism drown me under a false belief that I am and should always be the only person 100% in control of and the sole provider of my own access needs with no help or accommodation from anyone else.

There’s still a lot of work ahead of us activists and advocates if we are to carve out a world with true inclusion. It sucks how much work we have to do. Ever has it always been for those who hack through the wilderness with machetes. The work is hard and the rewards often come after the workers can no longer reap the benefits of their labor.

But we are shaping the future — or trying to, anyway — and there is an intangible, intrinsic reward to being a builder, a fighter, a gadfly. We are biting through, every day, piercing holes to let the light in. Whether shoulder to the wheel or struggling to avoid slipping beneath it, we keep working for forward momentum, gaining more ground, a millimeter at a time if that’s all we can get for now.

No, I’m not very good at working for or with others. I want to work. I love to work. But this world still leaves only narrow gaps for people like me to try to slip into if we can. I can drive. I can write. I have a good memory and a thirst for learning. I have many skills, valuable skills.

And I have a massive, rarely-met bundle of access needs that have stood as barriers between me and what I could earn for myself in life with those skills (and there’s more than just money I could earn in life if I had the right tools. So much more) all of my life.

In adolescence, I wanted to be a veterinarian. Or a neurosurgeon. There is little doubt I would have gone into some medical field or another if I’d had autistic-understanding mentorship in my youth. And an autistic-accepting working world to enter into.

So many other Autistics are in similar situations or growing up toward them. We are biting through but we need to keep biting and bite harder because we are still so far away from inclusion. We haven’t even begun to leave teeth marks yet.

We need a world where people aren’t excluded for moving differently or for communicating in different ways. We need a world where people understand that fulfilling access needs requires more than ramps and sign interpreters and Braille. Yes, of course we need more ramps and ASL and Braille and captions and curb cuts and so many other important access aids.

But for those of us seeking accommodation for neurodivergence (as well as those with chronic conditions, invisible disabilities, relapsing-remitting conditions that dramatically change in day to day access needs) access hasn’t even begun.

We’re early in this battle. It’s hard. We have to keep biting, biting, biting through. In the poetry of Laura Hershey, we all need to “remember, you weren’t the one / Who made you ashamed, / But you are the one / Who can make you proud.” (You Get Proud by Practicing)

We need to practice until we find enough pride to seek co-operation from others in getting our access needs met together. We need enough pride to own our needs and feel okay about getting them met and we need to shape a culture where access needs are respected and human beings — in all our variety — are valued.

I’m doing better with work than I ever have before, but still not well enough to support myself. In the process, I have gained further insight and increased clarity about myself. I have grown in compassion toward myself and practiced being proud. I have noted, yet again, some of the inequities that come with disability. And I have a renewed commitment to doing what I can to help roll the movement forward, pushing on for a better world, stacking hope upon hope in a collaborative effort to build a future where all are valued and supported instead of neglected and rejected.

Autistic Shutdown

shutdown

It looks like caution tape because autistic shutdown is something that should be treated with caution. A shutdown now and then won’t hurt, but regularly repeated over time, shutdown can lead to neurological damage, especially in children.

By now, pretty much everyone who knows much of anything about autism has heard of meltdowns — episodes of frustration and panic that seriously disrupt the lives of Autistic people, to varying degrees and amounts per person. But shutdowns don’t seem to get talked about as much as meltdowns and I run into people who, despite the blue-illuminated buckets of “autism awareness” out there, were completely unaware of the phenomenon of shutdown.

I had a pretty bad shutdown last week so I thought I ought to write a little bit about them. The people in my day-to-day life were unprepared to deal with a shutdown and that increased everyone’s stress levels. More education about shutdowns can’t hurt and it could help quite a bit.

Shutdowns and meltdowns are more similar than they might appear on the surface. One (somewhat simplistic but workable) way to think of shutdown is a meltdown turned inward instead of outward, much as some people describe depression as anger turned inward.

My most recent shutdown started off as a meltdown. My brain was going through all its usual short-circuits when some synaptic gap got crossed. Or something. One minute I was out of control, smacking myself in the face, as one does, and the next minute I was on the floor, unable to move. I started to get tunnel vision. My hearing began to get fuzzy. My vision closed and closed like turning off an old tube-driven television, closing down to a tiny dot of light that winked out just as my hearing entirely cut out, leaving me alone in the numbly terrifying darkness.

If you like to get your information from audio and video, you should take ten minutes to go watch Amethyst Schaber’s magnificent discussion of Autistic shutdown on her YouTube channel, “Ask an Autistic.” I’ll wait.

Shutdown is a response to overwhelm. It is a self-protective response — shutting down the circuits before they fry, to use computer/brain analogies — but it is as much a system overload as it is a system failsafe. And too much overwhelm for too long can cause some longer-term shutdown and loss of basic skills. We’re talking everything from forgetting how to tie your shoes to forgetting how to speak. And it can hit at age 14 or age 24 or age 54.

As Mel Baggs explained it: ” Most people have a level to which they are capable of functioning without burnout, a level to which they are capable of functioning for emergency purposes only, and a level to which they simply cannot function. In autistic people in current societies, that first level is much narrower. Simply functioning at a minimally acceptable level to non-autistic people or for survival, can push us into the zone that in a non-autistic person would be reserved for emergencies. Prolonged functioning in emergency mode can result in loss of skills and burnout.”

I my case, it was just a matter of hours before I started coming out of shutdown, much like an ocean creature finally creeping onto a deserted beach after a long swim across the Marianas Trench of shutdown. But I only had one, isolated shutdown. An extended amount of time living on “personal emergency reserves” due to being forced to operate at a higher clock speed than my chips are rated for, combined with a series of shutdowns would have left me pretty burned out. I’ve gone 17 days in shutdown before, unable to speak or properly care for myself. This is why shutdowns must be treated with caution and this is why going to apparent extremes to avoid shutdown is not “lazy,” “spoiled,”  “entitled,” or any other judgmental adjective anyone has ever been tempted to drop at an Autistic’s feet. Or heap on an Autistic’s head, for that matter, since it’s often on the floor alongside the feet once shutdown hits.

Miller and Loos wrote about shutdowns and stress, both in a manner accessible to laypeople and in an academic paper. Their observations were based on a case study of an Autistic six-year-old girl who was prone to shutdown under stress. The authors found that shutdown behavior gets labelled as conscious avoidance but is more likely an involuntary physiological process caused by “stress instability,” an inability to regulate the body’s overwhelming response to stressors. The authors hypothesize that shutdown begins with the basolateral amygdala (BLA) in the brain and quickly spirals into a debilitating feedback loop: the BLA is involved in experiencing emotions. When the BLA becomes overstimulated, it can become hyperreactive, leading to extreme emotionality, heightened levels of fear, and social withdrawal.

The BLA can quickly become hyperreactive when exposed for too long to corticotropin releasing factor (CRF), a “stress-mediating neurotransmitter.” In other words, stress gives the BLA a hair trigger and the resulting explosions feed more CRF to the BLA, ramping the overload up in a ratcheting cascade of intense panic that finally flips all the breaker switches, resulting in shutdown. This is probably why my own meltdown tipped over into shutdown: I had been stressed for days with multiple meltdowns and my system just couldn’t handle any more stimulation so it shut off to prevent my brain from frying itself. My brain crawled up inside its own virtual Faraday cage to wait things out.

In the case of “the SD child,” Miller and Loos observed that one shutdown would make her extra vulnerable to more shutdowns during the following three weeks. It takes that long for the BLA to “come back down” from its hyperaroused state. It’s pretty easy to see how quickly things can take a bad turn if the brain is not given time to heal. This is the low-detail version of why I have a medical discharge from the Navy and why I was able to hold a series of minimum-wage jobs before the military but unable to get a job at all afterwards. When I signed up for the Navy, I didn’t understand my neurology. It was a devastating blow to not only fail at boot camp but come out of it so debilitated I couldn’t even keep a roof over my head any more.

This is why I speak so strongly about helping Autistic children to build low-stress environments that nurture rather than damage their neurology. This is why I warn so often against shaming Autistics for not “pushing the envelope” the way you think they ought to instead of the way that protects them from damage. Of course it’s healthy to step out of one’s comfort zone from time to time. What you need to remember is that the entire world is outside of an Autistic’s comfort zone. We live our whole lives outside that zone. Please recognize and honor that. I just can’t say that enough: we are trying and the obstacles can be as massive for us as they are invisible to you.

Treat shutdown  as the medical situation it truly is. Help us get away from bright lights and loud noises. Help us find a quiet space to re-regulate our nervous system. And be gentle with us as we recover from a neurological episode, understanding how delicately balanced our brains are after marinating in the biochemicals of stress. We need support, not blame. We need peace and stress-relief, not punishment. And, always, we need love, understanding, and acceptance.

How We Teach Disabled People to Secretly Hate Themselves

self-doubt-424968_960_720

a silhouette of an agitated looking person, surrounded by words of negativity and self-doubt, such as “deficiency,” “disrespect, ” “disconnection,” “weakness,” “rejection,” “abandonment,” “inadequacy,” and so on. Mixed in with these words is the word, “disability,” which does not deserve to be connected to words like humiliation, instability, inadequacy, and insignificance but still gets slipped into the mix unquestioned because society’s ableism is so deeply ingrained in our cultural views that it is virtually invisible.

It’s a fancy academic-sounding term: internalized ableism. It means feeling less worthy than others, ashamed of who you are, unwilling to stand up for what you deserve, or even hating yourself. And it’s so culturally supported by society that many people (including myself) can play host to ableist self-deprecation or self-loathing for years without even realizing it.

I have been working on my own internalized ableism for years and still keep finding pockets of invisible ableism in myself. Let me put that in more blunt terms: after years of working on loving and accepting myself, I still find entire areas of my life in which I have held myself back unnecessarily due to feeling unworthy on a fundamental level.

I’d like to share with you some of what I wrote on my private Facebook wall this week, to help you understand how damaging internalized ableism has been in my own life:

-=-=-=-

When my daughter died, there was a small voice inside me that said, “it might be for the best. You are poor. You are disabled. What kind of life could you have given her? There is a reason so many people in your life put pressure on you to abort her. Maybe keeping her was selfish. Maybe it’s better that she didn’t live. What right did you have to try to bring life into this world anyway?”

This is the first time I have fully admitted those thoughts in public. I tried once. I went to a meeting of Compassionate Friends, a support group for people whose children have died. I got the first sentence out, “I was thinking maybe it was for the best that she died…” When I was interrupted by the meeting leader.

He was angry. He shouted at me. He asked me if it was for the best that another member’s child had died in a fire, that one was murdered, that one had died from cancer, that one had been hit by a car. He shouted and shouted and there was no room for me to shout back, “I wasn’t talking about your children! I was talking about me and what a horrible mother I would have been. Maybe it was for the best because no one should have to have a mother like me!”

But I didn’t shout back. I cried. And I ran from the room. And I fell down in the parking lot because I was crying too hard to see. I banged myself up pretty bad, but it didn’t hurt. I was already hurting too much to feel it.

And here I sit, almost 22 years later. In the intervening years, I told myself that I didn’t really want her. I told myself that I didn’t want a child, that I loved my freedom too much to give it up. I reminded myself of all the sacrifices parents make for their children and how expensive children are. How expensive and noisy and messy and heart-breaking.

I congratulated myself for dodging a bullet and reminded myself how grateful I am to be unencumbered and not responsible for another human being’s well-being. And life. And suffering. Because if I had a child, they would just grow up to hate me for all my shortcomings anyway. They would hate me for bringing them up in poverty. And they would be ashamed of my disability. And I would be burdensome to them. And, knowing my genetics, they would hate me for the disabilities they were born with because I was too selfish to just not reproduce.

And the truth is that I mourn her every day. And the truth is that I mourn not becoming a parent. And the truth is that I watch my ovarian clock tick, tick, tick, seeing time running out and knowing there is never a “good” or “right” time to have a child, but that all the best times are behind me and I would be a fool to have a child now, at almost fifty years old, in poverty, living in a vehicle, only just barely starting to build a career, finally, after a lifetime of false starts and shredded dreams.

And I wish I had the courage and opportunity to be that fool.

And I know I won’t. Because I’m too scared, too poor, too disabled. And I would be a horrible mother. And my child would grow to hate me.

But I beg of anyone reading this, I beg of the world: there are younger people out there who would like to have a family but are being held back because they are disabled and people in their lives have taught them that they shouldn’t have children, that it would be wrong, that they can’t do it. Do not leave those young people to end up in twenty or thirty years where I am, wishing they could turn back the clock and have another chance.

No parents raise their children alone. All parents have a support system comprised of some combination of friends, family, government, society. Disabled parents need support as they raise their children. All parents need support as they raise their children. I wish I had not been so ashamed of my poverty and disability that I let life slip by without holding my own, living, growing child in my arms and doing what all parents do: loving them and raising them as well as I possibly could.

Life’s own longing for itself. I missed my chance to fulfill it.

Don’t let that happen to today’s young, hopeful, disabled, would-be parents.

-=-=-=-

Feeling unworthy to have a family and raise a child is only one example of internalized ableism. People with internalized ableism can subconsciously (or consciously) sabotage their chances for a better education or a better job because they feel unworthy. They describe themselves using medical language of pathology because they were brought up to refer to their minds and bodies with words of lack and brokenness only.

Some forms of internalized ableism superficially resemble high self-esteem until you scratch the surface. I meet people who refer to themselves as “high functioning,” which might seem like a self-esteem phrase until you look a layer deeper and see the fear of being mistaken for “one of those.” When ableism is levelled against other people with your same disability but different support needs, it is a sign of internalized ableism as well. Those who truly accept themselves as they are have no need to punch down – whether directly or indirectly – against those with the same disability. Accepting yourself means accepting others who are like you, not fighting to distance yourself from those who resemble you in some way.

I see people recoiling from the word “disabled,” as if it were a great insult. You are fighting the wrong demons. Instead of fighting against the valuable and useful word “disabled,” please fight against the underlying ableism that causes you to recoil in horror from the word, “disabled.” Instead, do something pro-active to make the lives of disabled people better, happier, and more just. When you try to hide from the word “disabled,” you are only increasing the sum total of ableism in the world and that is what will truly hold you or your child back in life. Sadly, internalized ableism has held me back from so many things I wanted from life. It is a great injustice to allow rampant, half-hidden ableism to squash even one more dream. Root out ableism, both in society and within yourself, and let’s stamp it out forever.

Come to my Birthday Party!

a person on the beach, holding baloons, leaping high with joy

Update: due to illness, I won’t be going to South Carolina for my birthday after all. If you go, have a banana split in my honor, okay? Apologies for the inconvenience. I’m still planning to visit Surfside Beach later, just not right now.

I am inviting the world to my birthday party.

I am planning to spend the first weekend in March (4th, 5th, and 6th) celebrating my 49th birthday in Surfside Beach, South Carolina. In cooperation with Champion Autism Network, Surfside Beach, which is just south of Myrtle Beach, has proclaimed itself to be the first autism-friendly travel destination where Autistic people and their families can enjoy a quieter, less crowded, family-friendly beach in a town trained to understand and accommodate Autistic people with a judgment-free attitude.

Let me know if you’re coming so we can celebrate together! Bring the kids: they are VERY welcome here! I don’t have specific plans yet, although I might be doing a presentation. I’m definitely going to have a banana split. And I’m going to check out Surfside Beach so I can report back to everyone about food choices, general atmosphere, and autism-friendly holiday resources. And I’d really love to see any of y’all there!

 

Autism and the Pursuit of Happiness

a confernce nametag with a blue butterfy and the words Sparrow Rose Jones Keynote Presenter Autism and the Pursuit of HappinessToday I presented at the Third Annual Autism and the Pursuit of Happiness conference, hosted by Empower Autism. Asheville, North Carolina, has become one of my “spiritual homes” because it is a beautiful, laid-back city with a vibrant and thriving Autistic community, thanks to the tireless efforts of more people than I could count.

Despite the cold temperatures and snow (my nemesis!), I feel so blessed to have been able to participate in this terrific conference. The organizers were welcoming, friendly, and meticulous in seeing to every detail to maximize the comfort and safety of us Autistic presenters. My fellow presenters  are an amazing, wonderful, honest and lovely group of people. The audience was attentive, eager to hear what we had to say, and approached the whole event with open minds and open hearts.

I was asked by more than one person if the text of my presentation would be available online. I promised I would put them in my very next blog post, so here it is. Also, most of the conference was filmed and I will have a video of this presentation at some point in the future, although the specific date is an unknown to me.

I hope you enjoy my transcript and I look forward to being able to share the recording with you all soon.

Autism and the Pursuit of Happiness, Keynote Address, February 13th, 2016

What is happiness? We are bombarded with messages every day addressing that question. The answers range from the classic white picket fence family with two children and a dog to owning the perfect shade of lipstick or sports car to savvy investments to eating a decadent ice cream treat. Happiness is promised in advertisements nearly as much as sex (which is also a culturally approved route to happiness.)

But with all of our culture’s near obsession with happiness, who is talking about Autistic happiness? I hear so much talk about therapy and meeting milestones and being table ready. Socializing with one’s peer group and developing coping strategies. Addressing medical needs and finding good solutions for people with high support needs as their parents age. So many important aspects of autistic lives are discussed every day, but who stops to ask if we are happy, fulfilled, and enjoying our one and only precious lives?

Today we are the ones who will talk about Autistic happiness. You will hear from people discussing elements of happiness such as self-acceptance and love, harmonious family life, sexuality, empathy, relationships, and more. Today is the day we answer back to society and talk about our Autistic views of happiness and its pursuit. Today we do not wait for society to tell us what will make us happy. Today we take charge of our own lives and we will tell society.

Autism is filled with happiness. Our joy is like a bubbling spring that comes from deep within the earth, from deep inside of us. When that spring is allowed to flow, our happiness is visible, palpable. We are, like all humans, born to rejoice.

Happiness is when everything is arranged by color and size. Happiness is when the last number fits and the puzzle is perfect. Happiness is when a special, trusted person is near. Happiness is a feast for the senses that is just right, not too little, not too much. Happiness is a delighted squeal, a flapping hand, a leap, a twirl. Happiness is the gentle sawtooth edge of a cat’s purr. Happiness is the sparkle of water, the tickle of shifting sand, the squish of mud. Happiness is emptying the can of shaving cream and the entire roll of toilet paper just to see how they look and feel.

Happiness is when the hard things get accomplished. Happiness is feeling competent. Happiness is learning new paths to success. Happiness is making and keeping friendships. Happiness is being able to help others. Happiness is sharing the things we love, talking about them, words tumbling out of our mouths like carbonation. Happiness is not talking, holding words and thoughts inside and not being required to dilute them by sharing them with others who might not get it anyway.

I often describe myself as a fundamentally happy person. Happiness is my default state. It surprises me when others do not agree with that description, but one day I realized that the people who do not connect with the idea of me as a basically happy person are the people who rarely see me happy, often because they, themselves, are sources of unhappiness in my life. It has taught me to re-examine my relationship with anyone who does not share my view of myself as being a naturally happy person.

That was such an important revelation for me. You see, happiness comes first from within, but the things and situations and people we are surrounded by can amplify or squelch our happiness. This is true for everyone, of course, but experience and observation suggests to me that we Autistic people are much more vulnerable to the input or interference of others for many reasons. We have to protect our precious happiness from those who would steal it from us. And it’s hard, because not all of our happiness thieves are intentionally stealing our happiness. Some are even trying to increase our happiness, but in misguided ways that end up accomplishing the opposite effect. Others decrease our happiness because they weren’t even thinking about us or they weren’t thinking about us in supportive, understanding, and nurturing ways. So it’s not just about looking for the bad people, because a lot of very good people can diminish our happiness without ever intending to. They can drain our happiness away so innocently that they are as confused as we are about where our happiness went and why it has gone away.

So we develop shields to protect us – and sometimes those shields are helpful but sometimes they block out new happiness along with the risk of losing the happiness we already have. And we look for happiness allies, people who love to see us happy and do what they can to foster our happiness. In return, we can seek their happiness as well. Because one beautiful thing about happiness is that it can build on itself, spiraling upward higher and higher, just the same way that misery can twist backward on itself, spiraling us further down into the depths of despair.  But it is much more wonderful to soar higher and higher on updrafts of happiness, so we seek out our happiness companions and help one another learn to fly together.

At a conference dedicated to the pursuit of happiness, it feels contrary to talk about the things that inhibit or diminish or even crush happiness, but it is an important part of knowing what something is to understand what it is not as well. The darkness that snuffs out happiness can reveal the shape of the light that happiness is. Understanding those things that we Autistics are trying to shield our happiness from will help others to add their strength and love to our shield walls. Understanding the enemies of happiness helps us avoid innocently becoming one ourselves. Our goal is to help everyone to drink fully from their personal springs of happiness, chasing away the things that drill holes in us and let the happiness drain out until our buckets are empty.

So often, it is a balancing act. For example, loneliness can empty a person’s happiness bucket. Loneliness is different from being alone. Being alone can be soothing, familiar, friendly. Loneliness is when we feel forced to be alone. Loneliness is isolation and alienation. In loneliness it is easy to forget that we are loved and lovable. It is easy to forget that we are not alone.

But loneliness cannot be eradicated simply by being around other people. I don’t know about you, but when I am around the wrong people I feel far more isolated, more alienated, and more alone than I do when I’m by myself. Well-meaning friends, family, and therapists have encouraged me to “put myself out there” when I’m feeling lonely and low. It is the universal remedy to loneliness and depression after all.

For years, I marveled because that advice really does seem to work for some people but it didn’t work for me. When I am lonely and I go someplace where there are people, I feel worse. At first, I thought it was just me – a sign that I was hopelessly broken. Then I learned that I am Autistic and I decided for a while that it might be an autistic thing – being around people helps make loneliness and depression better, except not for Autistic people. But now I realize that’s not the full truth, either. The reason we are advised to go out in public when we are depressed is that connecting with people is what helps us feel less lonely and less depressed.

The more difficulty a person has in casually connecting with people, the less helpful the advice to “put yourself out there.” Being with others helps Autistic people feel less lonely and depressed, too, but we have to be more careful about who we choose to be around when we want to feel less lonely. Being around people who don’t understand us, people who blame us for things that are out of our direct control, people who laugh at our differences, people who treat us like children even if we’re adults … and, honestly, let’s face it, even children don’t like most of the ways that children are treated … these people will make us feel more lonely, more isolated, more depressed. And so the person who encouraged us to “get out there and meet people” has innocently contributed to draining our happiness even when they were trying to help patch and fill our bucket. This is one of the reasons many of us become afraid of going to therapy – if we get a well-meaning but clueless psychologist, they can innocently steer us in directions that turn out to be very bad for us.

But I noticed that the times I didn’t feel good and needed connection and specifically chose to go someplace with familiar people, people I knew understand and love me, people who feel happier when I am happier, people I am happy to see become happier, it really did lift my spirits and make me feel less alone. It really did patch my bucket and help me get it filled again from that mysterious inner spring from which so much happiness flows when it has not been blocked by loneliness.

So finding happiness and helping others find happiness is a balancing act. Sometimes we all need to be alone, but sometimes we are lonely and in those lonely times someone can blunder when they try to help us by encouraging or even coercing us to go to the wrong places. Happiness is a balancing act and autistic happiness even more so. And because our happiness is filled and drained in ways that can be subtly different (or, really, hugely obvious) it is so much more important that we learn how to protect our happiness and seek out our happiness allies to support one another and to cherish happiness together.

Our happiness thieves are not all so innocent and well-meaning, though. Some of the big bads we need to protect ourselves from, and often need support and assistance from others, are injustices and oppressions that disproportionately affect Autistic people and other vulnerable groups of people. Many Autistic people are in more than one vulnerable group, making so many of us even more vulnerable to the big bads.

Three of the biggest of the big bads are abuse, poverty, and lack of healthcare access.

Abuse is obvious – of course it drains happiness. What I was shocked to learn was how much more vulnerable we Autistic people are to abuse than the general population. Disabled people, in general, are at three times the risk of physical and sexual abuse compared to the general population and Autistic people are among the most vulnerable of all disabled people. Just one example: a study found that 83% of women with developmental disabilities have been sexually assaulted at least once in our lives. The same study discovered that 49% of people with intellectual disability experience sexual abuse or assault at least ten times over the course of their life. If these figures shock you, they should. I have faced repeated abuse in my own life and still it shocked me to learn how widespread the experience of abuse is among people with autism and other disabilities.

There are other kinds of abuse, too. Twenty percent of disabled people using a third-party payer system are passed from person to person, used as units of commerce by people who collect their disability money and give very little care in return, if any. That’s one-fifth of those on third-party who are only cared for the very minimum amount required to keep them alive so the money keeps coming in. And, at the risk of overwhelming you with the big bads, I also want to remind you that so much of what gets reported as “abuse and neglect” is actually rape, assault, and even murder, the crimes verbally downplayed by a system that views disabled people differently and, as a result, often fails to protect us.

Poverty is another big bad that drains happiness away. A British study found only 15% of Autistics had full-time employment. Many of us struggle on disability benefits that leave most of us surviving at 20% below the official poverty threshold. And I have known several Autistic people who have no income, no disability, no family to support them. Their lives can only be described with phrases like “crushing poverty” since merely saying “poverty” does not begin to convey their experiences. For many years, I knew them because I lived among them, crushed under the weight of lack myself. Twice the number of Autistics, per capita live in poverty than the poverty percentages of the general population.

Transitioning from one’s family of origin to independent living is so difficult. Finding and keeping employment is a huge challenge. Struggling to keep a roof over one’s head with no or very little income feels like a losing battle every day. These hefty challenges leave little room for personal growth, rest, creativity, socializing, and, of course, happiness.

The big bad of healthcare access drains happiness away through frustration, overload, and poor health. Too many Autistics had spotty healthcare, at best, before the Affordable Care Act and  the ACA hasn’t significantly helped increase access. Look at Mel Baggs and Paul Corby to see especially grievous cases of Autistic people being denied lifesaving medical care. Baggs had to fight for a feeding tube for zir gastroparesis due to being a non-speaking Autistic adult. Corby is still trying to get on a heart transplant waiting list despite being young and in excellent health other than his heart disease but he is being denied access to a transplant solely based on his autism. Our healthcare system is failing our most vulnerable citizens.

These are the battles we have to fight in our pursuit of happiness. These are the big bads we must all be joined against if we are going to be one another’s happiness allies.

In this battle, the strategy that works for each of will necessarily be different. We are divergent in many ways and there are many different flavors of autism and many different support needs and combinations of support needs. There are many different skill sets among us and many different challenges. But all of this can be said of the entire collection of human beings. We are as much similar as we are different – similar to other Autistics, similar to other human beings. To find happiness, we must be understood in both our similarities and our differences, not just one or the other.

I have found happiness. Most of my life it seemed impossibly elusive and I still struggle to protect my precious joy, but I am here to tell you that the Autistic pursuit of happiness is not a futile quest. I have had to color outside the lines and think outside the box in order to find happiness. As a matter of fact, I don’t just think outside the box – I live outside the box. I did my research and weighed my options and as a result I moved into my van because it is much more affordable than an apartment and gives me the freedom to move around, meeting other Autistics and working to increase understanding and acceptance of our different perceptions, our different lives, our different needs …. and our commonalities as well.

I know the life I have chosen is not for everybody, Autistic or not. For starters, I love driving and am pretty good at it, if I can say so myself. Most of my friends are not able to drive. Nearly all of my Autistic friends are unable to drive for a variety of reasons. I live in a very small space, which is also something that doesn’t appeal to everyone (although I like to joke that my home may be small but my yard is three million square miles. How can I feel cramped with that much space to explore?) I have a lot of variety in my life, but I have found ways to build in the comforting routines that keep me grounded and happy.

The main point of mentioning my alternate life style is that it is a way of living I chose for myself. I found the strength and courage to make a change. I found the power and autonomy to choose for myself. I surrounded myself with supportive people who were also excited about my choice and could help me sort through questions and problems that arose. This is what fosters happiness. Happiness is not a specific lifestyle, it is the ability to make decisions for yourself and be treated with respect and dignity, as a person who is capable of knowing what they want from life. Happiness is the freedom to choose and the support to make those choices into reality. This is what I want for all Autistic people: To have our competence respected, to have our support needs met with dignity, to be encouraged to build a life that serves our needs and wants. It seems to me that these are small things to ask for but so often it feels as if we are asking for mountains to be moved. Why are such basic things treated so often as unreasonable?

But they are building blocks that are fundamental to the pursuit of happiness. Yes, a person can find happiness in the most extreme circumstances. Viktor Frankl taught us this in his classic book, Man’s Search for Meaning. But if we are committed to fostering the Autistic pursuit of happiness, we cannot dismiss the importance of smoothing the way for happiness to flow freely. Just because humans are capable of finding happiness in the deepest pit doesn’t mean it is right for us to leave even one person lacking in the freedoms and supports that so many other people inherit as their birthright.

Many of the things you will hear from presenters today will elaborate on themes I have barely touched on this morning. Listen with an open heart and open mind. These discussions of pursuing happiness are long overdue in the autism world. They are inextricably intertwined with issues of health and safety, survival and growth.

The Reverend Doctor Martin Luther King, Jr. quoted the prophet Amos, speaking of “justice rolling down like waters and righteousness like a mighty stream.” When that righteous flood of justice roars through our valley, sweeping away the stones of restriction, oppression, stereotypes, and obstacles that crush us and dam our fountains of natural joy, we will be free to unfurl our tender roots. Nourished by our own flowing happiness, we will stretch our arms high, like branches growing upward, grasping the very rim of the sun. Our laughter will tumble down like birdsong as we pull ourselves and one another higher and higher still, rising on our tide of happiness, reaching ever toward an unlimited sky of dreams beyond today’s imagining. The pursuit of Autistic happiness begins right here, today, as we uncap the well and drink joyously together. Thank you for joining us today.

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