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!




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

My book is on sale today

Today, August 17th, my book will go on sale. The normal price is $5.99, but within a couple of hours after I make this post, the price will drop to 99 cents. It will stay at that sale price for 24 hours and then climb up, a dollar a day, until it returns to its normal price.

If you haven’t gotten a copy yet, this is the time to grab one! Also, please tell your friends so they can take advantage of this sale, too.

Thank you so much, everyone. I’m working on my next book right now and expect to have it out around the end of the year.


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):

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


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.





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