Tag Archives: Institute on Communication and Inclusion

Transitions

We returned home last night from the ICI Conference (Institute on Communication and Inclusion) at Syracuse University and though it was wonderful to see those family members we’d left behind, being “back” is hard.  I don’t do transitions well. As a kid I would eagerly anticipate having a sleepover at a friend’s house weeks in advance, only to return home depressed.  It is still like that.  It often takes several days before the weight of sadness, that accompanies returning from a place where I’ve had a terrific time, is lifted.  Even though all that excitement, fun and the constant interaction with lots of people is exhausting.  Yesterday I was so emotional I knew I was in overwhelm, but we had a whole day of presentations ahead of us, so I ploughed through.

When I reach this point of exhaustion and overwhelm I become emotional.  Anything can set off a torrent of tears.  If someone says something even remotely critical the tears begin to flow, watching a movie, saying good-bye, tears and more tears; it’s as though the social dam I’ve constructed gets chipped away until there are too many cracks to hold the feelings back.  Everything becomes intense, my friends become a lifeline, it’s no longer just nice to see them, I feel dependent upon them, as if without them, I may die, words spoken with anything other than kindness, feel like knives, music induces feelings of pain and euphoria all at the same time.  I am hyper aware of and easily overloaded with the feelings and interactions and the sheer numbers of people.  This is how I’ve always been.  I understand this about myself.  I am able to function, barely, but not without lots of tears.  So much so that Ibby handed me her plaid handkerchief at one point, causing me to cry even louder and harder and then came over and hugged me as I sobbed on her shoulder.

I become hyper aware of the injustices of the world, I feel both ecstatic to be among so many wonderfully accepting people, while also horrified by the “real” world we live in and must soon return to.  The disconnect starts to feel impossible.  I begin to believe the change so many are trying to create will never come about.  I slide helplessly into despair.  And then I bolster myself up by remembering other people’s words.  At yesterday’s keynote address with Jamie Burke, Sue Rubin, Tracy Thresher and Larry Bissonnette, Tracy typed,  “Larry likes typing out poking fingers on hurtful labeling to push his wrecking ball toward brick walls of structures of old thinking.  What I intend is to push my own ball of fiery passion of change to the global stage and shatter the glass like Pascal did in the city.  Pascal clumsily broke the water glass; Tracy intends to go about the Inclusion Movement more like George Clooney.  Charming Tracy’s plan; worldly connections repairing injustices is the wretches-in-arms plan.”

I have the choice to join all those who are using their “own ball of fiery passion”.  It feels less like a choice and more like an honor.   We can join each other.  Linking our arms, united in making society understand that to include is in everyone’s best interests and all will benefit.

I am ending with photographs from the last three days spent immersed in a world that accepted, appreciated and above all else, presumed one another competent…

Ibby
Ib

Christine Ashby
Christy

Rosemary Crossley
Rosie

Em types with Leah
Leah& Em

Me, Amy & Ibby after our presentation, “Blogging to Communicate”
Ariane, Amy & Ib

Em takes the stage
*Em

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Ibby & Larry Bissonnette
Ib&Larrry

Douglas Biklen and Me
Doug &Me

Doug Biklen and Ibby
Ib& doug

Doug Biklen & Amy Sequenzia
Doug&Amy

Mark Utter during the Q & A after the screening of his film, I am in here
Mark Utter

Anne Donnellan
Anne Donnallan

Typing with Emma
Me & Em

Sue Rubin
Sue Rubin

Tracy Thresher
Leading Man Tracy

Emma’s String
Em's String

Em, Mark Utter & Ibby
Em, Mark & Ib

 

“Presume Competence” – What Does That Mean Exactly?

When my daughter was first diagnosed at the age of two and a half, presuming competence was not a concept I was ever told about or had heard of.  And even if someone had suggested we do so, I’m not sure I would have fully understood what that meant exactly.  So what does “presume competence” really mean?  And how and why should we carry out a presumption of competence?

In an interview, Douglas Biklen explained:  “Assume that a child has intellectual ability, provide opportunities to be exposed to learning, assume the child wants to learn and assert him or herself in the world.”

A key component to presuming competence is to become aware of the prejudice that currently exists regarding autism and how these ingrained beliefs harm not just our children, but ALL Autistic people.   Like any prejudice, based on layers and layers of misinformation, misperceptions, and misunderstandings, we must be willing to acknowledge our own “beliefs” before we can begin to deconstruct them.

When my daughter was little with almost no language I could not understand how it was possible for her to learn to read and write if she did not speak first.  I was surprised and confused when I learned how completely wrong I was.  When I read about all the non-speaking Autistic people who had learned to read and write despite being given no formal instruction, it seemed magical to me.  This mind that seemed, from my limited perspective, to not understand so much, actually was taking in far more than I could imagine, let alone believe.  It wasn’t until I was able to see my own limitations caused by the things I had been told about autism and hence, my daughter, that I was able to move beyond that thinking and embrace another way of thinking.  I had to acknowledge my misperceptions and the misinformation I was given, then I had to question everything I thought I knew and was being told.  I had to seek out Autistic people who were kind enough to share their own experiences before I was finally able to dispense with my erroneous ideas and move beyond them.  In case anyone’s missing it, there is a certain irony in my early assumptions regarding Autistic competence.

At the Institute on Communication and Inclusion conference, which we’ve just returned from, and I began writing about in yesterday’s post, Tracy Thresher typed, “… couldn’t let anyone know I could read and I understood what was said to me the training gave me the way to communicate with others.”  On the Wretches and Jabberers website, Tracy wrote, “My communication is paramount to my well-being and is key to my being an active citizen.”  He goes on to say, “I may appear to be a man shrouded by a cloak of incompetence but if you will take the time to listen to my typing you will understand I am intelligent.”

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.

A presumption of competence may seem like a leap for many non Autistic people,  it may even feel like a disconnect.  Some may argue that their non-speaking child cannot possibly understand, that they know this beyond any doubt and I must ask, but how can you know this for sure?  We may tell ourselves that our child is too “severe” and we are setting them up for certain failure by presuming competence.  To these people I would suggest the opposite is true.  The only true failure is when we walk away and assume incompetence.

Presume competence means – assume your child is aware and able to understand even though they may not show this to you in a way that you are able to recognize or understand.

To presume competence means to assume your child or the other person does and can understand when they are being spoken of and to.

Presume competence means talk to your child or the other person as you would a same age non-Autistic child or person.

Read and have available age appropriate stories and give access and instruction to age appropriate learning material.

Presumptions of competence means treating the other person with respect and as an equal without pity or infantilization.

It does not mean that we will carry expectations that if not met will cause us to admonish, scold or assume the person is being manipulative or just needs to “try harder”.

To presume competence does not mean we assume there is a “neurotypical” person “trapped” or “imprisoned” under an Autistic “shell”.

Presuming competence is not an act of kindness.

Presuming competence is not something we do because we are a “good” person.

We do not get to pat ourselves on the back because we have presumed competence.  If we believe we deserve a pat on the back and/or acknowledgement, then we are not presuming competence, we are more likely being condescending.

One last thought regarding presuming competence…   to presume incompetence is to actively do damage.  Let’s all agree not to do harm to our fellow human beings.