Tag Archives: equality

Demanding Speech

Over the weekend I witnessed a young man who did not easily speak and when he did say a word, it was clear how hard he was having to work for that one syllable.  Yet the people around him bombarded him with questions.   Questions he could not answer with spoken language, but that did not stop them from asking.  When he managed to make a sound resembling the answer they wanted, they would pause for a moment before asking him another question.  After about ten minutes of this he retreated into what looked like a sensory friendly room, where he rocked gently back and forth, holding his hands over his ears.  Even so, the questions continued.  

Another boy who was having his lunch was told during a ten minute time period to “look at me” more than a dozen times.  He too could not easily speak and was asked a great many questions.  Things like, “Is that good?” When he said, what sounded like, “Yes,” the other person said, “Look at me.  Stop.  Put down your fork.  Look at me.  Is it very good?”  When he again said, “Yes,” he was allowed to eat his lunch for a few seconds in peace before the next question came.

People often ask me why I object to ABA therapy.  It is not only ABA therapy that I object to.  It is ANY therapy that treats another human being as these very well-intentioned people were treating these young people, all of whom were teenagers.  I object to the way so many, who are in the field of autism are trained and how that training  affects how they speak to and interact with people who are autistic.   I do not, for a moment, doubt that they believed that what they were doing was good and ultimately helpful to the kids they were working with.  Yet each one of them was unconsciously or not, treating those kids as though they could not and did not understand what was being said to and about them.  The kids were not being treated as one would treat their same age non autistic peers.

On the Presume Competence – What Does That Mean Exactly – post I wrote, “What I have come to understand, is that a presumption of competence is much more than a set of beliefs, it is a way of interacting with another human being who is seen as a true equal and as having the same basic human rights as I have.”

What I saw was fairly typical of what I see often – well-meaning people who are working with autistic people, but who do NOT presume them competent, not really.  Had I said something to any of these people, I’m sure they would have expressed surprise with my observations of what they were doing and how they were interacting.  I would even guess that they would have told me that they were presuming them competent.  These were not mean people, they were not sadistic people, these were people who believed in the training they’ve been given and believed this was the best way to interact with these teenagers.

At one point the young man who was trying to eat his lunch, looked over at me and my son.  My son, smiled at him and I did a little wave and said, “hi.” He nodded his head ever so slightly at us and then the person who was paid to sit with him, asked him another question.  I do not doubt for a second that all the kids there were competent.  In fact I am convinced of it.  I know it to the core of my being as I have been around so many people who cannot speak, or who can speak, but not easily or naturally and who are all competent.  But this was not how they were being treated.  This idea, which is popular with a number of therapies, not just ABA, that we withhold desirable things until the person speaks as demanded, is not something I agree with because it is based in a presumption that wanting something is equated with ability and this is incorrect, even if it obtains the desired result – a verbal utterance.

Until Emma began to write, using her letter board, I had a great many thoughts about her that have proven incorrect.  Until she began to express herself through those words she painstakingly spells out, I was not treating her as the exceedingly  competent human being that she is, even though I often thought I was.  Even now, on any given day, I do not do this as well as I’d like to.  All those years of ingrained thinking are extremely difficult to change.  But change I must…

A Renassaince Princess

A Renassaince Princess

Humanity

“Please try to remember that what they believe, as well as what they do and cause you to endure, does not testify to your inferiority but to their inhumanity and fear.” ~ James Baldwin from The Fire Next Time

If there is one thing I want my Autistic child to know, it is this idea written by James Baldwin.  He was writing about race, but his words apply to any who have been on the receiving end of prejudice.

I think about my father a great deal.  A proud, athletic man who broke his back in a horse back riding accident which eventually forced him to rely on a wheelchair to get around.  My father used to call me every Sunday.  We would chat about things that interested him, the weather, his garden, his cat, the dogs, the horses.  He would ask me about what I was working on.  He was tremendously supportive of my career.  I was battling my own demons, demons of my own making, but demons never-the-less that I rarely discussed.  I would ask him how he was, but he would always answer, “I’m still here.”  I knew that I would have to call my mother to learn about his physical well-being  if I wanted anything more in depth.  He never complained.

One day I told him I was tired of him always saying he was fine, I really wanted to know how he was.  I wanted him to tell me the truth.  He said, “You want me to tell you about the constant pain I’m in?  You want me to tell you about how my bodily functions are slowing down and what that’s like?  Is that what you really want to know?”  I remember pausing for a second and feeling confused.  And then felt terrible for my hesitation.  What I really wanted was for him to be fine.  I wanted him to be happy and energetic and well.  I wanted him to feel good and he did not.  He did not feel happy and energetic.  He was in pain.  Physical and emotional pain and a lot of it.  At the time I wanted to be the one who would change his circumstances.  I wanted to be able to make him better.  I wanted to save him from his pain.  But I couldn’t.  I couldn’t.

When my daughter tells me she wishes there was a cure for autism, I feel that same stab of pain.  This is the price of our inhumanity.  I think how society and my past actions have done this to her.  All those people, the media, the articles, the doctors, the therapists who spoke of her neurology as a terrible thing, a neurology that is not understood, that most see as inferior.  And I blame myself for having bought into this belief for so many years.  The idea that if I could just find the right pill, the right bio-medical intervention, the right therapy, we would successfully alter her brain and make it so she could talk and have conversations with us, so she could learn to “pass” if she wanted to, so that she’d at least have that option if she chose it, despite the devastating price she would have to pay to achieve this.  So that she’d have a chance.

But she couldn’t achieve this goal and I learned to stop asking her to.  I found other methods, not therapies, not treatments, but rather ways to teach her, ways to work with her specific neurology, and I keep practicing these methods because I have seen how others who created them and have trained in using them are able to converse with her through writing.   While I do all that, I keep telling her and showing her that she is loved and of value.  She is worthy and perfectly imperfect and deserves to be treated kindly and as the intelligent, sensitive, talented human being that she is.  She has as much right to be in this world as anyone else.  She is equal to her peers not less.  Being indistinguishable is not a goal.

My daughter’s neurology is not inferior.  Those who believe this are wrong.  My daughter is no more inferior than I am.  She has challenges, they may feel at times insurmountable to her, but we as a society can make her challenges easier.  It is our inability to lessen her challenges that is at fault, not her neurology.  It is our responsibility to challenge our views, to call each other out when we see injustices being done, to treat each other with the same respect and care we would have others treat us.  We must never give up.  We must never allow ourselves to fall into lethargy or the false believe that we are better than anyone else.  We are not.  We are human.  Imperfect.  We need each other.  We need to push each other to do better.  We can do better.  We must do better for our children, for this world, for all humanity.

Jen at Down Wit Dat is doing a blog hop.  It is open to all blogs in the disability and special needs communities: self-advocates, allies, parent advocates, and others are encouraged to share posts. 

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But What About Alex?

Another Autistic child has died… stabbed… multiple times, in the chest, by his mother. Alex Spourdalakis was 14 years old.

The mother of a 14-year-old with severe autism who was found stabbed to death…” ~ Daily Herald.com

But what about Alex?

The mother of a 14-year-old with severe autism…” ~ Pantagraph.com

But what about Alex?

First degree murder charges have been filed against Dorothy Spourdalakis, the mother of a teen with severe autism…” ~ abclocal.go.com

But what about Alex?

A young man. Stabbed. Not once. Multiple times.

We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the Pursuit of happiness.” The United States Declaration of Independence – 1776

But what about Alex?

In the 237 years since those words were first written we have failed miserably at putting this idea into practice. All human life is not treated as equal; apparently it is not “self-evident”. We continue to live in a world where equality is still desperately sought by a great many.

For those who are born unable to speak and Autistic, those among us, who are given the label “severe”, their lives matter even less. We not only think of ourselves, (those of us who are able to speak and whose neurology is not Autistic) as superior, our lives deemed more worthwhile, but we are reminded of our superiority every single day of our existence, just as those who are born unlike us are told in myriad ways how they are not.

Autistic people, particularly those with multiple physical challenges, are spoken of as “burdens” to society, they are talked about as though none who are Autistic are capable of understanding the words being used to describe them. They are not consulted. They are not listened to. For the most part they are being ignored. And those who are raising their voices in protest, who dare to speak out against the crimes committed against them, they are met with resistance, anger, indignation. They are often ridiculed, dismissed, silenced or simply ignored.

When a parent murders their child, we cringe in horror. When that child is disabled we sympathize. The media brings in psychologists to help us understand. We dissect the child’s history, we look for clues, what could have provoked a parent to do such a thing? Sometimes we conclude the parent was crazy and unfit, but not before we make sure there was nothing unusual about the child. As we rally around, trying to distance or identify with the parent, Alex and those like him are all but forgotten. His life is seen as an example of what some must endure. His life becomes an illustration of that burden on society that everyone wishes would just go away.

But what about Alex?

What about what Alex had to endure? What about what it must have been like to live his life for those 14 years? Where are the news articles discussing who this young man was? What did he love? What were his passions? What made him happy? What must it be like to not be able to speak? Did he communicate through typing?  Did he read and write and if so what did he like to read?   What was his favorite subject?  Did he love music?   Did he like animals?  Was there something special he enjoyed doing?

What about Alex?

Alex

 

The Magic of Connection

At a certain point during Richard’s radio show  the other night, where he was featuring Moms, he asked me about those years when we were determined to find a cure for our daughter.  I didn’t want to take up time on the show to talk about all of that because there was so much to cover, but also because it makes me really sad to talk about it and I also know it is hard for many of my Autistic friends to hear, two of whom were guests on the show and many more who I knew were listening!  I try hard not to live in regret, but I’ve done things that I really DO regret.  Things I really do wish I could go back and erase and do again differently.  More than anything, all those therapies and bio medical treatments we did, fall into that folder labeled “Things I wish I could do over.”

My reluctance to talk about all of this the other night on the radio wasn’t because I don’t think it’s important as much as it’s really painful to talk about and I know, for many of my friends, people I love dearly who happen to also be Autistic, it is very painful for them to hear me talk about those years, all those years when I was so intent on curing my daughter.  It may remind them of their own upbringing.  It may bring up all those devastating feelings of being unworthy or that they were somehow damaged or diseased, or any of the other hurtful words people use when discussing autism, that hurt them.   So to my Autistic friends, please skip down to the final paragraph.  The last thing I want to do is cause more pain and suffering to those I love.

At the time, after Emma’s diagnosis was given, I believed autism was something that could be “treated” the way one treats a disease.  Only it isn’t a disease.  But at the time I thought things like vitamin supplements , homeopathic remedies, therapies like ABA and diets could actually remove the “autism”, that these things would somehow transform her brain from an Autistic brain to a non Autistic brain.  I know it may sound over the top, even ridiculous to many, but at the time, I wanted to believe and so I bought into the idea that autism could be ‘removed’.  The concept of someone being pressured into learning to “pass” as non Autistic and the massive emotional and physical toll that inevitably takes, was not something I knew about at the time.  It never occurred to me to wonder what the fallout might be or how my own child’s self-esteem might suffer as a direct result of what I was doing and saying.

Over time, as I kept trying different things, which culminated in going to Central America for stem cell treatments, I continued to believe, being the very best mother I could be, meant doing everything I could to “remove” her autism.  I believed all those words that are used to describe autism: disease, affliction, epidemic and crisis.  Autism was BAD.  Autism meant all kinds of things and none of them were positive or beneficial.  So that’s what I pursued – a cure.  And I pursued a cure with the same dogged persistence I now apply to changing how autism is viewed by others.  Where I once was determined to change my daughter, I am now determined to change society’s views of autism and, it must be added, society’s views of Autistic people.

You cannot talk about autism without talking about Autistic people.  Yet people do all the time.  They talk about autism as though their words will have no affect on those who are Autistic.  But you can’t do that. When we talk about autism we ARE talking about our Autistic children.  We ARE talking about our Autistic friends.  We ARE talking about Autistic people.  What we say, how autism is depicted, DOES impact those who are Autistic .  It does directly affect how others then treat them.  To pretend that all the derogatory language used has no direct effect on Autistic people is ignoring that fact.  And this is where all of this no longer is just about my daughter and the risks I took and the impact my actions have had on her.  This is about something far bigger than any one person.  This is about a segment of the population who are Autistic and the fallout they must cope with from all of us talking about them as though it wasn’t about THEM, but instead was about a word – that word being – Autism.

Toward the end of the radio show, Lauri Swann spoke of how her son, Henry developed a relationship with his mentor Tracy Thresher and how transformative that was for him.  I reflected on how magical it was for Richard, Emma and me to visit Lauri and her family during the screening of Wretches and Jabberers this past April.  We reminisced about the evening before the screening, when we all went back to Lauri and Russ’s home and everyone sat around their dining room table typing to one another.  The only word I could come up with to describe that visit was “magical“.  And it was, because like the Autcom conference last fall and the Syracuse conference this past winter, being in an atmosphere of inclusion, where every single person is treated with the same respect as anyone else, where all are treated equal, is magical.  How did we move so far from those words in the Declaration of Independence ~ “We hold these truths to be self-evident, that all men are created equal”?  How did we get to this other place, where an evening like the one I’ve just described is considered out of the ordinary?

Now, sitting here writing this post, I am thinking about two more magical days and evenings when Ib came to New York City and stayed with us.  Ib is like family.  My children adore her.  My husband adores her.  I feel honored to know her, let alone call her my friend.  I don’t know how to talk about all of this when lines are drawn, when words are used that separate and divide.  I can’t do that and I don’t want to live in a society that does.  What people do not understand fully, or cannot completely appreciate, is this – when we stop dividing people into categories of us and them – we open ourselves up to the experience of being united, of really feeling that indescribable magic of connection.   The beauty of belonging.  The joy of interacting with our fellow human beings and rejoicing in our diversity.  There IS magic in that.  This is what I wish all human beings have the opportunity to experience.  This is what I hope I will live long enough to see occur on a grand scale.

Henry & Tracy during our magical visit with Lauri’s family

Henri & Tracy

Adrianna, Amy Sequenzia, Em & Me
Adrianna, Amy, Em and Me

Nic & Ib on the High Line

Nic & Ib

“Autistic People Are…”

*Following on the heels of the tremendously successful “Autistic people should…” flash blog last Saturday, today’s flash blog has bloggers adding their thoughts to “Autistic people are…”

Autistic people are…   

human beings.  

with the same rights as anyone else.  

equal.  

as diverse as those who are not Autistic.  

Autistic people are.  

Welcome to the human race.  

Now let’s start treating them as such.

For some history and the flash blog link, click ‘here‘.

As a direct result of last Saturday’s flash blog and thanks to the hard work by Yes, That Too, Unstrangemind and many other Autistic bloggers, this happened – Google Changes Policy for Autism 

While those policies have not yet gone into effect, it is hopeful news and a wonderful first step.

“Autistic People Should…”

Today is “Autistic People Should…” flash blog day!  Please take the time to read these terrific posts by Autistic people who are blogging in to change the current views by non-autistic people of what Autistic people should or should not do or be.  Autistic people are taking these three words today and making them their own.

The Autistic People Should… Flash Blog

To give all of you an idea of what comes up if one types “Autistic people should” into a google search box at the moment ~

Yeah.

This has to change.  WE can change this, all of us, together, by spreading the word, sharing the flash blog link, tweeting the posts.  Let’s help change the way we think about autism and Autistic people.  We ALL benefit when we work toward ending oppression and respecting every person’s right to exist.

“Embrace-ness-ness”

For those of you who have not viewed the interview of Carly Fleishman, you should:  Autistic Teen Finds Inner Voice. (There is a 15 second ad that you must cope with, but the interview is well worth the annoyance of the ad.)

The clip is an amazing example of a severely autistic non-verbal teenager who finds a way to “speak” by typing on her computer.  What occurs as a result is profound with far-reaching implications for all of us.

A follower of  EmmasHopeBook, an English teacher of 7th graders, and I have been engaged in a “cyber conversation” regarding disabilities, “tolerance”, how we view intelligence etc.  She wrote me this morning regarding her english class:  “We’ve also been discussing the semantics of disability (and earlier in the year, racism and homophobia). The word “tolerance” has come up in class, and the kids actually hypothesized and agreed that it’s just not strong enough for the world they want to live in. There were some strong voices saying that they feel it is actually negative! One girl said that, to her, to “tolerate” someone or something means “OK, I’ll put up with this if I have to, not because I want to,” and then they universally decided that the ultimate goal they should be pursuing and activating for is something like equality, or, as the same girl put it “It’s something like ’embrace-ness-ness.’ ”

I love this.  We live in a world, populated by people whom we often judge.  We tend to come up with ideas about other people and the lives they live.  The unknown can be uncomfortable and so we draw conclusions and then behave as though these conclusions were facts.  Someone cannot speak and we conclude they’re intelligence is lower than those who can.  A person is disabled and we conclude their intelligence is disabled as well.  How can we embrace what we do not know or understand?  It can be a frightening prospect and yet it is the key to a better understanding.

When my father finally succumbed to a wheel chair, having had a debilitating accident in his 40’s he was treated differently.  People condescended to him, they felt sorry for him.  He was a proud man, who at one time was extremely athletic.  Being in a wheel chair changed him.  He became despondent, he hated how he perceived people were viewing him – with pity.

When we are out with Emma, people at first believe her to be a “normal” little girl.  But once they speak to her or are with her for an extended period of time, they begin to realize she is different.  Usually they have no idea what is “wrong”, but the way they behave changes ever so slightly.  Sometimes they’ll raise their voice or their tone will change.  They clip their sentences, they speak as one might to an animal.  (I have been guilty of many of these things, by the way.)  It is confusing to be confronted with a child who looks neuro-typical, but who clearly is not.

I wish I could inhabit Emma for a day so I could feel and know what it is to be her.  Would I treat her differently if I knew what it was like to be her?   I hold onto the idea that if I continue working with her on her reading and writing, one day she’ll be able to tell me.

Last night as I lay beside Emma reading to her, she began laughing.  I put the book I was reading down and said, “What’s so funny, Em?”

“Crash into foof!” she said, breaking into hysterical giggles.

“Did you do that at school?”

“Yes!”

“That sounds like fun,” I said.  Emma was silent.  “Do you want me to keep reading?”

“Yes!”

After I finished reading about our moon landing in 1969, I said, “One day Em, you’re going to be able to read and write.  I can’t wait to read and hear what you’ll say.”

“Go to the computer with Mommy and Daddy,” Emma said.

“Is it easier to communicate on the computer?” I asked.

“Yes. Computer with Mommy and Daddy,” she said.

“Okay.  We’re going to work on that,” I said.

“Mommy sing song?”

“Right.  I’ll sing you a lullabye.”  After I sang her a few songs I hugged her.  “I love you Em.”

“So much,” she said.

Emma

For more on Emma’s journey through a childhood of autism go to:  EmmasHopeBook