ABA

This week, I watched a community implode. I’m not going to talk about that, though, because it was very painful to watch people I love being treated so badly. But a lot of the implosion centered around a topic I do want to talk about. That topic is ABA – Applied Behavior Analysis, a common type of therapy for Autistic children. I watched people fight around in circles, chasing their metaphorical tails. It will take some time and lots of words to unpack this topic, but I hope you will stick with me on this because it’s so important and there is a lot that needs to be understood here.

Here’s the argument in a nutshell. It gets longer, angrier, and much more detailed than this, but I am exhausted just from reading the fighting, so I’m boiling it all down to two statements. And both statements are correct.

Autistic adult: “ABA is abuse.”

Parent of Autistic child: “I’m not abusive and my child is benefitting greatly from ABA therapy.”

You read me right: both statements are correct. That is part of what I need to unpack today. I think the best place to start is with the fact that both people above are using the term “ABA”, but what they are actually talking about are usually two different things. First we need to define ABA.

Well, actually, first I want to put people at ease. Parents — it’s got to be painful to feel like a whole group of people are ganging up on you and telling you that you are abusing your child. You love your child. You want the best for your child. You are spending thousands of dollars out of pocket to try to give your child the best possible chance in life. You worry about your child. You feel like you never even knew what love was until your child came along. You are not abusing your child. And if something you are doing is harming your child, you want to know about it and stop it. It hurts to be told that you are abusive toward the child you love so much.

And my fellow Autistics — you grew up feeling picked apart. You were subjected to things that harmed you. You still have PTSD today from things that may have been done with your best interests at heart but were actually quite damaging. You don’t fit in to the world around you and the adults who were charged with your care when you were growing up were stumbling around in the dark when it came to trying to figure out how to raise a child like you were. It is triggering to see that so many of the things that hurt you when you were growing up are still being said and done to and about children who are so very much like you were when you were their age. You want to stop the cycle of pain and you want children to grow up happy, healthy, and loved. It frightens and angers you to see many of the “best practices” that Autistic children today live with.

And there is a good chance that the two of you — the Autistic adult and the parent of an Autistic child — are not even talking about the same thing when you say “ABA.” Major organizations (particularly Autism Speaks) have lobbied hard for Medicaid and insurance companies to cover ABA therapy for Autistic children. As a result, many therapists now call what they do “ABA,” even in cases where the actual therapy is very different from genuine ABA, in order to have their services covered by insurance. It’s similar to the philosophy of therapists I’ve known who don’t believe in diagnosing mental illness but put a name on their patients’ struggles anyway because many insurance policies only pay for therapy if the treatment is for a diagnosis listed in the DSM. That’s the main point that I wanted to make, but there’s still a lot to say on this topic.

If almost everything is being called “ABA” then what is actual ABA? And why do Autistic adults say it is abusive? What sort of warning signs should parents be watching for? What is harmful about certain practices? Those are a lot of questions to answer, but I will do my best. Bear in mind that I’m not a therapist — ABA or otherwise — and I’m not a parent. I’m one Autistic adult, one person coping with therapy-induced PTSD, one person exhausted by the all-out war I see every day between people like me and people who love people like me, one person who wants to see a better world for everyone (but, I admit, especially for Autistic people.)

ABA was developed by Dr. Ivar Lovaas. As a 1965 Life Magazine article explains, the core theory of ABA was that a therapist, “forcing a change in a child’s outward behavior” would, “effect an inward psychological change.” The article says, “Lovaas feels that by I) holding any mentally crippled child accountable for his behavior and 2) forcing him to act normal, he can push the child toward normality.”

Much has changed, but this core premise of Lovaas’ work remains solid. ABA’s core belief is that forty hours per week of therapy geared toward making a child externally appear as “normal” as possible will “fix the brokenness” inside that made the child behave that way. ABA believes in an extreme form of “fake it until you make it,” and because it is behaviorism at its most pure — that is, a psychological science that treats internal processes as irrelevant to function (Lovaas said, “you have to put out the fire first before you worry how it started”) — it treats behavior as meaningless and unwanted actions rather than as communication.

This approach is troubling for many reasons.

ABA strongly emphasizes the importance of intensive, saturated therapy and insists that it is crucial to get 40 hours a week of therapy for very young children. Think for a moment how exhausted you, a grown adult, are after 40 hours of work in a week and you will begin to understand why we get so concerned about putting a three-year-old child through such a grueling schedule. Being Autistic doesn’t give a three-year-old child superpowers of endurance. Forty hours a week of ABA is not just expensive, it is painfully exhausting. ABA maintains a schedule like this with the intention of breaking down a child’s resistance and will.

I understand that you are afraid for your child. Their future is unknown. You are worried about their ability to live a fulfilled life. You are worried about their ability to have self-supporting work and be taken care of after you pass on. And I understand that this fear, coupled with a deep desire to give your child the best you can give them, can lead you to accept the ABA attitude of “more is better.” But stop a moment and think about the capacity for sustained focus of the average three-year-old and consider what a therapy that tries to double (or more) that capacity is doing to a child. If you stress a child out or even traumatize them with extreme therapies, you are paradoxically increasing the chances of incapacitating PTSD in the child’s future. Yes, you want your child to develop as much as they are able to develop and you want them to enjoy their life and hopefully provide for themselves, but exhaustion and trauma are not going to aid those sorts of development.

Worse than the exhaustion of so many hours of therapy, though, is the heavy focus on making a child “indistinguishable from his peers.” The main goal of ABA is to make a child LOOK normal. This is insidious for a few reasons. first, it is the best way to get the parents to continue to co-operate with the therapists for many years. Of course you are going to be moved to tears if the therapist gets your child to look you in the eye or say “Mommy” to you or sit at the table and eat a meal without fidgeting or melting down. Of course you will feel like the therapist is making progress and healing your child. That is a very natural response. So you will see the progress and you will want to continue with ABA therapy and you will be very defensive when adults Autistics online suggest that what is happening in your home might be a bad thing. What was bad were fights every mealtime. What was bad was never hearing your child’s voice. What was bad were the judgmental or pitying stares you and your child got when you went out in public and people saw your child spinning around or flapping her hands or becoming so anxious you were forced to leave your groceries unpurchased and flee the store.

But if your child is getting classic ABA therapy, what you are seeing is an illusion. And what looks like progress is happening at the expense of the child’s sense of self, comfort, feelings of safety, ability to love who they are, stress levels, and more. The outward appearance is of improvement, but with classic ABA therapy, that outward improvement is married to a dramatic increase in internal anxiety and suffering.

ABA therapists are trained to find out what your child loves the most and hold it ransom. Often, it’s food. If your therapist suggests withholding food as a form of behavioral therapy, run screaming. That is harmful. If your child’s therapist will not allow you to remain in the room during a session (they will usually tell you that your presence will be a distraction that will keep your child focused on you instead of on the therapy they need to be paying attention to) that is a big warning sign. If you are able to witness your child’s therapy sessions and your child is spending a lot of time crying or going limp or flopping on the floor or showing signs you recognize as indicators of anxiety or fear, beware the therapy. If the therapist insists on pushing forward with the therapy when your child is crying or going limp instead of giving your child recovery time, run screaming. Therapy that trades your child’s sense of safety in the present for a promise of future progress is exactly the sort of thing that Autistic adults mean when they talk about abusive therapy.

Therapy should make your child better, not traumatize them, possibly for many years, potentially for the rest of their life. A therapist might tell you that “a little crying” is a normal thing, but I was once an Autistic child and I can tell you that being pushed repeatedly to the point of tears with zero sense of personal power and knowing that the only way to get the repeated torment to end was to comply with everything that was asked of me, no matter how painful, no matter how uneasy it made me feel, no matter how unreasonable the request seemed, knowing that I had no way out of a repeat of the torment again and again for what felt like it would be the rest of my life was traumatizing to such a degree that I still carry emotional scars decades later. It doesn’t matter whether the perpetrator is a therapist, a teacher, a parent, or an age-peer: bullying is bullying.

In my opinion, the goal of therapy should be to help the child live a better, happier, more functional life. Taking away things like hand flapping or spinning is not done to help the child. It is done because the people around the child are uncomfortable with or embarrassed by those behaviors. But those are coping behaviors for the child. It is very important to question why a child engages in the behaviors they do. It is very wrong to seek to train away those behaviors without understanding that they are the child’s means of self-regulation. When considering whether you have made a wise choice in what therapy you are providing your child or not, you want to always remember a few cardinal rules: behavior is communication and/or a means of self-regulation. Communication is more important than speech. Human connection is more important than forced eye contact. Trust is easy to shatter and painfully difficult to re-build. It is more important for a child to be comfortable and functional than to “look normal.”

Work on things like anxiety and sensory issues first. Work on getting better sleep (both you and your child). Things like eye contact can come later, much later, and only if your child is comfortable with them. There are work-arounds. Lots of people fake eye contact. Lots of people have good lives with minimal or no eye contact. But forcing a child to do something that is deeply painful and distressing for no reason other than to make them look more normal is not just unnecessary, it is cruel.

I live two blocks from a behavioral clinic and I frequently walk several blocks out of my way to avoid walking past it because of the kinds of things I have seen when walking past the clinic. Let me tell you about the last thing I saw there, the thing that made me decide that I would rather walk an extra half-mile than risk seeing more ABA therapy on the sidewalk in front of the clinic.

A mother and father came out of the clinic with a little girl, around 7 years old by my best guess. Mother said, “Janie (not the actual name), look at me.” Janie didn’t look at her mother. The mother said to the father, “you know what to do,” and the father took hold of Janie and turned her head toward mother, saying, “look at your mother, Janie.” Janie resisted, turning her head away and trying to pull out of her father’s hands.

Mother crouched down and Father lifted Janie’s whole body up, laying her across Mother’s knee, face up. “Look at your mother, Janie,” father said. “Look at me, Janie,” Mother said. Janie began to whimper. Her body was as stiff as a board. Father held her body firm and Mother took hold of Janie’s head, “look at me, Janie,” Mother said.

I was glued to the sidewalk. I didn’t want to see any more but I couldn’t look away, couldn’t walk away. Janie began to moan and thrash her body. Father’s hands held her body steady as she kicked and flailed. Mother’s hands held Janie’s head steady. Both kept urging Janie to look at her mother. Janie’s moans turned to screams but neither parent let her go.

Finally, Janie’s entire body went limp with defeat. She apparently made eye contact because Mother and Father began to lavish praise on her. “Good girl, Janie. Good eye contact. Good girl. Let’s get some ice cream now.” Janie’s limp body slid to the sidewalk where she lay, sobbing. Father picked her up and carried her to the car, the whole way praising her submission. “Good eye contact, Janie.”

a drawing of eyes looking away with the caption forced eye contact hinders human contact

(This image – a drawing of eyes looking away with the caption
“Forced eye contact hinders human contact” – is a sticker and is also
available as a light t-shirt or dark t-shirt in adult and children’s sizes.)

What did Janie learn that day? I’ll give you a hint: it was not that people are more trusting of those who make good eye contact. It was not that she will appear more normal and thus fit into society better if she makes good eye contact. It wasn’t even that Mom really loves it when Janie connects with her through the eyes like that.

Janie learned that adults can have whatever they want from her, even if it hurts and even if they have to hurt her to get it. Janie learned that her body does not belong to her and that she has to give others access to it at any time, for any reason, even if she wasn’t doing anything that could hurt herself or others. Janie learned that there is no point in resisting and that it is her job to let others do what they want with her body, no matter how uncomfortable it makes her.

You may think I’m exaggerating or making this out to be more extreme than it is, but stop for a moment and imagine years of this therapy. Forty hours a week of being told to touch her nose and make eye contact and have quiet hands and sit still. A hundred and sixty hours a month of being restrained and punished when she doesn’t want to touch her nose and being given candy and praise when she does touch her nose for the 90,000th time. Nearly two thousand hours a year of being explicitly taught that she does not own her body and she does not have the right to move it in ways that feel comfortable and safe to her. How many years will she be in therapy? How many years will she be taught to be a good girl? To touch her nose on command? To make eye contact on demand? Graduating to hugs, she will be taught that she is required to hug any adult who wants a hug from her. She will be punished when she does not hug and praised and fed when she does.

And who will protect her from the predator who wants to hug her? Who will teach her that she is only required to yield her bodily autonomy for her parents and therapists but not for strangers? What if the predator turns out to be one of her therapists or parents? How will she resist abuse when she has had so many hours of training in submission? Therapy is an investment in the future, but ABA therapy is creating a future for Janie of being the world’s doormat. Is that the future Janie’s parents want for her?

If your child’s therapist believes it is more important for your child to comply with every command than to have any control at all over his or her body, run screaming. And don’t forget that a layer of training does not change the underlying neurology. ABA uses the same methods and theories as dog training and if I train my dog to shake hands, it doesn’t make him more human. It just makes him a dog who can shake hands. Similarly, if you train an Autistic to make eye contact and not flap their hands and say “I love you, too” and stay on task, it just makes them into an Autistic who can fake being not-autistic with some relative measure of success. Underneath the performance is still an Autistic brain and an Autistic nervous system and it is very important to remember that. Being trained to hide any reaction to painful noises, smells, lights, and feelings doesn’t make the pain go away. Imagine years of living with pain that you have been trained to hide. How long would it last before you broke down? Some Autistics last an amazingly long time before they break down and burn out.

And intensive ABA therapy will also teach a child that there is something fundamentally wrong and unacceptable about who they are. Not only is that child trained to look normal, they are trained to hate who they are inside. They are trained to hate who they are and hide who they are. They will work very hard to hide who they are, because they have learned to hate who they are. And as a result, they will push themselves to the brink of destruction. And when they finally crumble from years of hiding their sensory pain and years of performing their social scripts and blaming themselves every time a script doesn’t carry them successfully through a social situation, they will be angry at themselves and blame themselves for their nervous breakdown and autistic burn-out.

All those years of ABA therapy will have taught them that they are fundamentally wrong and broken; that they are required to do everything authority demands of them (whether it’s right or wrong for them); that they are always the one at fault when anything social goes wrong; that they get love, praise, and their basic survival needs met so long as they can hide any trace of autism from others; that what they want doesn’t matter.

Now you know what to watch for. Your child’s therapist may use the term “ABA” in order to get paid, but they might not be doing these harmful, degrading, abusive things to your child at all. If your child’s therapist is respecting your child, not trying to break down the child’s sense of self and body-ownership, treating behavior as communication rather than pointless motions that need to be trained away, valuing speech but not at the expense of communication, giving your child breaks to recover and not over-taxing their limited focusing abilities . . . then they can call their therapy anything they want to, but it is not ABA. (And hold on to that therapist! They are golden!)

And I hope that the next time you hear an Autistic adult say that ABA is abuse, you are compassionate. Remember the suffering so many of us endured. Know that we say those things because we love your children and want to help them. We do not say them because we hate you and want to call you abusers. We don’t hate you at all and we want to help you. Sometimes we are clumsy in how we go about it, because, well, we are Autistic and communication difficulties are part of that package. But know that when we attack ABA, we are not intending to attack you. We want your child to sleep through the night and laugh with joy and become toilet trained (on whatever schedule their bodies can handle — don’t forget that we tend to be late bloomers), and have a healthy, happy, productive, love-filled life.

We want you to rejoice in parenting and connect with your children on a deep and meaningful level. When an Autistic adult says “ABA is abuse,” you might be tempted to hear, “you are abusing your child.” But that is not what we are saying. Next time you hear an Autistic adult say “ABA is abuse,” please hear those words as, “I love you and your child. Be careful! There are unscrupulous people out there who will try to convert the fear you feel for your child’s future into money in their pocket at the cost of your child’s well-being.”

And if you are a therapist and you are upset when we say “ABA is abuse”, know that we are not talking about you . . . unless you are using shock punishments or making children endure long hours of arduous therapy beyond their ability to cope or teaching children that they do not have the right to say who can have access to intimacy with their body or not (and forced eye contact is a particularly nasty violation of a person’s control over their bodily intimacy.) If you are not the kind of therapist who we are talking about when we talk about the harm of therapy, then we are not talking about you! Thank you for being one of the good guys. We need more like you. Teach others what you know. Spread the love and help change the world, please!

Thank you for reading all of this. I know it was a lot of words, but this is such an important topic. The children are the future and I don’t have words to explain how painful it is when I see Autistic adults being verbally bullied and abused because they are trying to help the children by helping parents to understand more about the lived experience of autism and more about the kinds of things that can be very harmful to Autistic lives. I had over a decade of therapy in my childhood and much of it was not good therapy and I am explicitly damaged because of it. When I say ABA is abuse — when we Autistic adults say ABA is abuse — we are speaking from a collective wisdom gained through painful experiences that have left lasting scars on us. We don’t want anyone else to have to go through the pain we have gone through. Please respect where we are coming from and please do not add to the trauma by attacking us for trying to help others. Thank you.

Not being able to speak is not the same as not having anything to say

The title of this post is a famous saying, many of you will already be familiar with. The saying comes from an Australian educator, Rosemary Crossley, the developer of Facilitated Communication Training, or FC for short.  FC is a method of helping people with difficulty in planning movements, such as those with autism or cerebral palsy, to gain sufficient control of their bodies to be able to point out letters and spell words.

FC is controversial, but I really wish it weren’t. There are some small studies that claim to find that Autistics using FC are not really communicating but being used, like a puppet, by the facilitator. I have several friends who use FC to communicate and I have zero doubt that I am really communicating with my friend. I do not believe that a facilitator can manipulate anyone that skillfully using the methods of FC. I was pleased to see a much larger study showing that FC is valid communication on the part of the person rather than their facilitator because that is something I already knew, without needing a study, but it’s reassuring when science can back up our observations. FC can be difficult to test because there are aspects of the Autistic neurology that can make some of us not perform well on standard tests, but many of the participants in the study linked above were shown a word while their facilitator was out of the room and then were able to type that word when the facilitator returned with no knowledge of what word was going to be typed.

FC came to America and has helped many Autistics be able to communicate with others in a way that everyone could understand. This is a great gift and should be supported! I sometimes feel that therapists place too much emphasis on acquiring speech and almost no emphasis on acquiring means of communication. To my mind, the most crucial first thing to do when trying to help an Autistic person is to open up lines of communication. Some of us speak late and some never speak or never acquire speech that is good for communication purposes. Don’t waste one minute! Open up communication first! It can be sign language, independent typing, pointing to letters on a card or board, facilitated communication, graphic systems like PECS or Bliss, the Rapid Prompting Method (RPM), or whatever works. That’s the important thing — use what works! Communication is more important than speech. The connection of communication is worth using any method that works. In the case of autism, we have a developmental delay that causes us to hit milestones later than our age peers. Speaking may come later (or not at all) but the need for communication begins at birth. Not being able to speak is not the same as not having anything to say!

A friend came to me yesterday and said that she had a t-shirt with that quote on it and needed to get a replacement because it was starting to develop holes and show other signs of wear and age. I Googled and found another t-shirt but she didn’t want to buy from the seller for ethical reasons (which I support) so I made some designs for her. I made five designs that can be put on adult or children’s t-shirts. A couple of them are also available as stickers or greeting cards. I am sharing them here, in case someone else wants a t-shirt with this quote as well. I love this quote because it challenges assumptions and it reminds us all that ideas and communication are the important part. Using speech to accomplish these goals is great if it’s attainable. But if a person is not able to speak, we can’t just dismiss them as not having anything worth communicating!

 

notspeak01

notspeak02

a sunflower with the quote superimposed on it

Quote superimposed on a photo of a joyful child wearing a tie-dye t-shirt

the quote in rainbow text on a dark background

#istandwithconner

Unstrange Mind in her Cow Hat

A photo of a smiling female in glasses, an olive green shirt, and a brown plush cow hat. Above the image, are the words I am Unstrange Mind. I love my cow hat! And … Below the image are the words in all capital letters I stand with Conner!

Today I read a post from A Diary of A Mom about Conner and his Mickey Mouse ears. Read her post to see what a wonderful person Conner is.

Conner loves his Mickey Mouse ears. His ears and his camera help him feel comfortable in crowds. And most people love Conner’s Mickey Mouse ears. But when he was at a conference, someone approached him and told Conner he should “lose the ears” so he could blend in better with others. Conner stood up for himself and said he loves his ears, they are a part of who he is, and they are no different from someone wearing their favorite ball cap to feel comfortable.

I stand with Conner!

I have a favorite hat, too, that makes me feel happy and comfortable. It is a big plush cow and it is warm and comfy and soothing and adorable and the cow’s face helps to shield my eyes from too bright light. My cow hat makes people smile and feel happy. My cow hat has a friendly cow face. I think my cow hat puts most people at ease, but a few people don’t like the cow hat and wish I wouldn’t wear it.

My cow hat is part of who I am, just like Conner’s Mickey Mouse ears are part of who he is. Lydia from Autistic Speaks started a campaign for us all to wear our Mickey Mouse ears (or, if you don’t have Mickey Mouse ears, a hat that makes you feel special and happy) and photograph ourselves in our hat and support Conner. Conner stood up for himself and his right to wear his hat and I stand proudly with Conner, wearing mine!

I hope you stand with Conner, too!

(And do visit Conner’s page!)

 

Deeper Levels of Stigma

Robin Williams and Michael J. FoxSince you’re on the internet, you’ve already heard the latest news — Robin Williams’ wife announced that he had been diagnosed with Parkinson’s Disease. He hadn’t wanted to announce it publically yet. He had not returned to drug or alcohol use. He was deeply depressed because of the Parkinson’s diagnosis.

The responses I saw, just in the first hour after learning this new information, revealed to me that there is a deeper level of stigma than mental illness. When all we knew was that Robin Williams had succeeded at suicide and that he had a history of drug and alcohol abuse and that he had spoken openly about depression and mania, there was an outpouring of compassion about the pain of depression. A few people aside, people were talking with compassion about depression. People were sharing phone numbers of hotlines. People were telling one another to be there for their friends, to listen, to care. People with mental illnesses wrote messages of solidarity and I even saw many folks seeing this climate of compassion and taking the strength and courage from it to come out of the closet about their own mental illness.

But now that we know that Robin Williams had Parkinson’s, what is the first thing I see? “It’s still tragic, but it’s more like a rational choice now.” and, “I feel as if, now came out he had Parkinson’s disease, we can agree he had a reason to choose to die.” and “If laws for euthanasia where better he could have chosen to die among his loved ones, family and friends and not alone and cruel.”

I’m happy to say that others joined the conversation and spoke about why those kinds of attitudes are so chilling to disabled people. But still, the immediate reactions of able-bodied people shocked me. And it showed me that we still have so much stigma to dig ourselves out from under.

Earlier this week, we were having conversations about the very real and very harmful stigma of mental illness. And we were seeing many strong and heartening responses about depression and suicide and reaching out to one another. Even Matt Walsh, who had been skewered for a blog post titled “Robin Williams Didn’t Die From a Disease, He Died From His Choice”, was trying to say that depression-fueled suicide shouldn’t happen because we should be reaching out to one another, loving one another, helping one another through our pain. He clarified his position in a follow-up post titled “Depression Isn’t a Choice But Suicide Is“. Although he still referred to depression as a “demon,” a position that Maia Szalavitz points out is stigmatizing in itself: “When even today’s headlines about addiction and mental illness refer to struggles with “demons,” you know that stigma remains strong.” (from How Much Did the Stigma of Mental Illness Harm Robin Williams?)

Going forward, we need to duplicate the sensitive conversations we were having about the stigma of mental illness, but this time, we need to talk about the stigma of disability. The instinctual responses I saw from people when they learned that Robin Williams had been depressed about being diagnosed with Parkinson’s are part of a “better off dead” stigma that disabled people encounter from others every day. In the Autistic community, we see it played out graphically, month after month, as parents and other caregivers kill Autistic children and adults and onlookers talk about the great difficulty of taking care of Autistic people, the cost, the suffering, the quality of life. So much sympathy goes to the parents who had been “saddled with such a burden” and so little sympathy, outside of the community of Autistics and our allies, goes to the disabled victim.

When the first response to learning that Robin Williams had Parkinson’s is that his suicide makes sense now, there is something very wrong. One person said, “Couldn’t he have called Michael J. Fox?? He died from fear of disability.” And I wonder if Fox will tell us that he did speak with Williams. Or if he will reveal that he had no idea about Williams’ diagnosis. I don’t know if Fox could have helped Williams come to terms with the diagnosis or not, but Fox has been pretty open about his own life and he’s surely someone I would want to have in my corner while I grappled with my life choices in the face of a Parkinson’s diagnosis.

Parkinson’s is a difficult disease to live with. Then again, so is depression, but our culture’s instinctual response to depression was to remind people that we should fight against it, not to say that it makes sense to commit suicide because who would want to live with the pain of depression? We must overcome our cultural attitude that a disabled life is a life not worth living. We must learn enough about the lives and thoughts of disabled people that we no longer have a knee jerk reaction of approval to suicide committed to avoid a disabling disease. And we must work to build a society that accommodates and includes disabled people, welcoming disabled people into the community of “us” rather than relegating disabled people to a pitied and feared “them” that “we can all agree” would have a perfectly valid reason to kill themselves.

Not only does this attitude devalue the lives of disabled people, judge their worthiness, “other” them, but it is dangerous. It is the beginning of a slippery slope. If we say that Robin Williams’ suicide is now understandable, acceptable, rational, reasonable, supportable . . . we begin to erode the right of disabled people to live our lives. If we are too much trouble, If we cost too much, if we demand too many accommodations, are we forfeiting our right to exist? If the world thinks that we would be better off dead, how willing will people be to help us live a good, satisfying, fulfilling life? Who wants to spend resources on people who “shouldn’t be here”?

So if you hear about Robin Williams’ Parkinson’s diagnosis and you are tempted to think it makes his suicide better, more rational, or even okay, stop to think about what attitude you are carrying toward disability and why you are shocked at a suicide due to depression but only sad about a suicide due to disability.

 

Levels of Stigma

I wasn’t going to write about Robin Williams. My mind dances away when I even think about him too much right now. I open my Facebook feed, see post afterRobin Williams post about Robin Williams, and close Facebook again. It’s too much to think about.

You see, not so long ago, a dear friend of mine hanged himself. I had known Tom for decades. He saved my life once. Well, more than once in many different ways, but one time specifically and obviously. He saw me through so many hard times and so much homelessness. He was hysterically funny, when he wasn’t deeply depressed. He was kind and generous and always ready to make me laugh when I was down. He was a solid constant in my life . . . until he wasn’t. And he was bipolar.

So when another funny, brilliant, generous-hearted, larger-than-life bipolar man hanged himself so soon after, when I still haven’t recovered from losing Tom. Well, my mind dances away when I think about it too much.

But this morning, my friend posted, “If anyone blogs about Robin Williams and the posthumous erasure of his Bipolar dx something he openly shared, and the harm done in having the wrong conversation by doing so, please tag me so I can post and signal boost.” And I realized I have to write about Robin Williams.

Because my friend is right — Robin Williams had bipolar and had been honest about it for years and I have not seen a single blog post or Facebook status, and only very few news reports that mention that fact. It has been effectively erased. And so, as the world mourns the loss of one of the most loved celebrities, dazed that someone who made others so happy could be so depressed, everyone is talking about depression, the devastation it brings, the statistics (1 in 5 people will experience severe depression at some point in their life), and what to do to help a depressed or suicidal friend.

This talk is important and these things are true. But as my friend put it, it is the wrong conversation. And it is time for people to step forward and start having the right conversation. Robin Williams spoke openly about his depression and suicidal thoughts as far back as 2010, but now so many people are saying they didn’t even realize he was depressed. The media is teaching us about depression but almost no one has been speaking of his actual diagnosis of bipolar. I said something about bipolar less than an hour after the first announcement of his death and got bitched at for saying it. Why is it so wrong to talk about Robin Williams and bipolar? Why is his bipolar being called depression by almost everyone?

It is due to levels of stigma. It is similar to something we have seen in the autistic community. I’ve been told (by well-meaning people) that I shouldn’t call myself Autistic; I should call myself Asperger’s (even though I’m not) because there’s less stigma attached to it (although since Adam Lanza, that’s not so true anymore.) I think that’s like what’s happening here, with Robin Williams. Depression is hard for people to understand. The suicide of a man who made the world laugh is even harder — because we still live in a world where people mistakenly believe a depressed person could just pull himself up by his own bootstraps. And who had longer, stouter bootstraps than Robin Williams?

But bipolar is still subject to so much stigma that people can’t bear to associate it with Robin Williams. Depression is slowly coming to be understood, gradually becoming more accepted, bit by bit getting to be something that people feel safe talking about openly. But bipolar is still mysterious, frightening, mythologized. If you don’t believe me, just watch a few episodes of the ABC series Black Box.

It is not my place to speak about the lived experience of bipolar. But I lived with and loved Tom and his roommate, Carl, both bipolar, and I learned that with the pain come incredible gifts — brilliance, passion, fire, creativity. All things Robin Williams had in abundance. I am not able to write the last word about bipolar, but I felt compelled to write these first words, in the hope that I encourage others to talk about the brilliance and beauty of bipolar and the fire that burns so brightly it can singe or kill.

It is so important that so many people are talking about suicide and depression right now, in the wake of Robin Williams’ suicide. But now it’s time to slice through the layers of stigma and talk about bipolar, too.

 


 
Other posts about Robin Williams and bipolar (feel free to add more in the comments and I’ll include them in this list):

http://angeliceve.blogspot.com/2014/08/robin-williams-was-my-bipolar-comrade.html

http://nicocoer.tumblr.com/post/94491921228/robin-williams-had-been-out-about-having-bipolar

Live-tweeting Vectors of Autism with Laura Nagle: An invitation

unstrangemind:

Several of us will be gathering on Twitter to watch Vectors of Autism together and tweet about it as a group, while we watch. Please join us!

Originally posted on Thirty Days of Autism:

Vectors of Autism posterAutistic people and those who love and support them are working hard to take a stand against negative and stigmatizing messages about the experience of being Autistic. It can be exhausting and can feel like an uphill battle counter the caustic vitriol that spews from powerful organizations such as Autism Speaks.

A few weeks back, my friend, Lei Wiley-Mydske, and I live-tweeted as we watched Autism Speaks’ gross docutrauma (frickety frack, I love neologisms) “Sounding the Alarm: Battling the Autism Epidemic” which you can read about here and here.

But fortunately there is a flip side to this negativity.

There are films and voices and resources that are created by or involve Autistic people in an honouring way, and that give insight into the experience of being autistic. These contain important and helpful messages and information about the kinds of supports that are needed and how we might accommodate…

View original 498 more words

When Language Matters More Than People

a mouth trying to speak but held captive by barned wire

Image description: a mouth trying to speak but held captive by thorns like barbed wire.

In case you hadn’t noticed, disabled children and adults are being abused and killed. A month doesn’t go by without a major news story about an Autistic person being killed — sometimes by police who weren’t trained in how to interact safely with Autistic people in law enforcement situations but more often by the person’s own parents or caregivers. It is tragic, depressing, frightening, angering.

And it is part of a disturbing trend in which people see Autistic people and other disabled people as somehow less than human. This is the most troubling of all — those dramatic stories of abuse and murder are the bloody tip of a massive iceberg and there are days when I feel crushed beneath all that ice of hatred and dehumanization.

But what I really want to talk about today is what happened to my friend, Lei Wiley-Mydske. Lei is a beautiful Autistic woman, mother of an equally beautiful Autistic child and the founder of the Ed Wiley Autism Acceptance Lending Library in Washington state (I plan to tell you more about this outstanding library project in a future post, so stay tuned!)

To explain how it is that many people decided that language matters more than people — at least so long as those people are Autistic people — I have to backtrack a little bit.

All of this started with one of those major news stories of abuse. On July 21st, the Washington Post reported that a couple in Rockville Maryland had been charged with abusing their 22-year-old twin sons. The young men are Autistic and the couple chose to keep them locked in a smelly, soiled, bare tile basement. The men were removed from their parents’ custody and the couple were charged with abuse and false imprisonment of vulnerable adults.

Five days later, the Washington Post ran another article. The lead paragraph reads, “Adult twins with autism locked in a barren basement room every night. No lights. No bed. Their parents charged with abuse.” Yet the newspaper had the gall to run this article with the headline: Coping with adult children’s autism, parents may face ‘least bad’ decisions, implying that it was a “least bad” decision to keep human beings locked up in conditions so awful that if the twins had been dogs instead of Autistic humans there would have been an outcry and no one would have dared to support the couple’s choice.

The article does quote the father of an Autistic adult saying that we can’t condone their choice, but that statement is lost in a sea of hand-wringing and justifications.

This is where my brave and beautiful friend Lei enters the story. She wrote this wonderful letter to the editor that was published on August 1st in the Washington Post:

Where’s the Empathy for Autistic Children?

Regarding the July 27 Metro article “Autism in adults is a challenge for parents”:

As both a parent to an autistic child and an autistic adult, I am horrified by The Post’s inability to even entertain the humanity of autistic people. Locking up children in their homes is abuse. It is not a “least bad” decision. If those children were typically developing, would we even be defending the parents?

Autistic people have the same rights as anyone else. The fact that I needed to type that sentence in 2014 is incredibly disturbing to me.

When your reaction to this type of abuse is to defend abusers and not victims, something is wrong with you. When we defend abusers of disabled people, we make it easier for such abuse to happen again. I don’t care how difficult it is to put up with me, I do not deserve to be locked in a basement without any of my basic needs being met. That is torture, not a “least bad” decision.

I can’t think of one situation where abusive treatment would be justified.

Where is the empathy for us? The Post seems to be missing that a lot of the time.

Lei Wiley-Mydske,
Stanwood, Wash.

This is a beautiful and heart-felt letter. Almost all of the responses to it on the Washington Post site were deeply supportive. But Lei is also on facebook and “findable” because of her work with the Lending Library and many of the direct responses she got were equally deeply disturbing.

On the surface, perhaps, the responses seem polite and innocent. All of us who choose to identify as “Autistic” rather than “people with autism” get these comments at some point. What I’m referring to is the insistence that we are wrong if we do not use Person-First Language.

I’ve written about Person-First Language before. If I could only send you to one link to help you understand why so many of us choose to use the label Autistic instead of Person with autism, I would send you to Lydia’s wonderful essay and collection of links: The Significance of Semantics: Person-First Language: Why It Matters. It’s long, though, so I’ll just boil it down to this: autism is not some extra thing we carry around outside of our true selves. Autism is pervasive and there is no part of me that is not Autistic. I don’t have a core of non-Autistic me that is surrounded by a shell of autism. As the saying goes, it’s turtles all the way down. To say that people must call me a “person with autism” in order to remember that I am actually a genuine, real, human, PERSON despite also being autistic is to say that YOU do not see me as a person and YOU do not believe that others will remember that I am a person unless you are using language to constantly remind everyone of that fact. I find that deeply offensive. I am obviously a person and anyone who insists that I must refer to myself with person-first language is only telling me that THEY do not see me as a person and want me to remind them of it over and over.

And this is exactly what the people did who approached my dear friend, Lei, and told her that it was great that she was published in the newspaper but she should have used person-first language when she talked about herself and other Autistic people. Those people were effectively patting her on the head in a patronizing manner and saying, “good job person with autism, but you used the wrong words, honey.”

That is infuriating!! An Autistic woman bravely stood out from the crowd to say that abuse is abuse and it is never a “least bad” decision to abuse human beings and she was told that her message didn’t matter because she said it wrong. Do we really have to walk around saying “person, person, person. I am a person. I am a human being. Oh, and by the way, other people are also people and would you please remember that we are human and not abuse and kill us? person, person, person.”?  Humans who are not disabled are not expected to go around reminding everyone that they are people. Why must we? What the hell is wrong with the world? You people who refuse to acknowledge our personhood unless we talk about it the way you think we should: what the hell is wrong with you?

Next time someone tells you that they are hurt and angry about the way the world talks about them and people like them, if you feel tempted to tell them that they told you with the wrong words . . . just shut up and listen. Because if you tell someone that they are only allowed to complain about how they are being spoken of if they complain in the words that you think they should use, guess what? You are exactly the problem.

 

 

 

Follow

Get every new post delivered to your Inbox.

Join 1,008 other followers