Imagine that you had a task that you were asked to do every single day that you absolutely hated because it was painful for you to complete.  Or, you found yourself completely bored because you were asked to complete the exact same to do list every single day with zero variation.  How might you handle that situation?  Likely, you would go to your boss or whoever else was asking you to complete these tasks and would have a conversation with them.  I’m sure you can start scripting that conversation in your head and think through what you might say depending on all of the different ways the other human might respond.

 

That’s all well and good, but now imagine that you can’t use verbal speech to have that conversation and your fine motor skills aren’t jiving on that particular day, so you also can’t write anything down.  How might that same scenario look now?  That one is likely a little more difficult to think through.

 

For any adult reader of this blog post, that would likely sound like a challenging conversation to navigate.  And yet, every day in schools across America and beyond, children are trying to problem-solve these same scenarios, and worse, with teachers, paraprofessionals, and other school personnel.

 

My name is Brianna, and I am currently a Ph.D. candidate in Special Education and Disability Studies.  Prior to my doctoral work, I completed a Bachelor’s degree in Elementary Education and a Masters degree in Special Education.  But before all of that, I was a child in the k-12 system trying to navigate the world by communicating through means other than verbal speech.  I was identified as having autism when I was 3 years old, and had reliable means of communication until I learned to independently type when I was 10 years old and learned to speak when I was 16.  When I was on the public school system, I received services through sixth grade under the dual labels of autism and intellectual disability, but once I was able to type we were able to have the intellectual disability label removed.  However, for all of my k-12 public education I was segregated into self-contained special education programming.

 

I am thankful to have had the opportunity to collaborate some with Dr. Julie Causton, including on her podcast “The Inclusion Podcast.”  If you haven’t yet checked it out, I highly recommend going to check it out here: https://drjuliecauston.podbean.com.  Julie and I collaborated for four episodes of her Podcast, so I will give a brief description of each episode below.  Within each, I will share a few stories from my experiences, that I describe as both funny and horribly not funny, in segregated special education, as well as some possible take-aways for educators from those experiences.

 

Episode 15: My (Un)Special Education-Brianna-Competence

Within this episode, I share a few stories that center around the ways in which my competence and ability as a human being was continually questioned during my k-12 experiences.

 

Episode 16: My (Un)Special Education-Brianna-Communication

As I mentioned earlier in this post, I did not start using verbal speech for communication until I was 16 years old.  Within this episode, I will share a few stories about ways my own experiences with communication and how motor planning and communication collided for me.

 

Episode 17: My (Un)Special Education-Brianna-Friendship

In this episode, I will tell a few stories about the ways in which adults thought they were supporting my development of friendships, when they were in fact making it quite impossible to make any friends.

 

Episode 18: My (Un)Special Education-Brianna-Behavior

During the final episode of this series of podcasts, I share a few stories about the ways in which my actions, that served very specific purposes related to communication and sensory experiences, were viewed as extremely challenging behavior by the adults surrounding me at school.  In this episode, I challenge the listeners to rethink everything traditionally thought about behavior.

 

Across all four of these podcast episodes, my biggest hope is that listeners will start to recognize the importance of listening to first person experiences around disability.  While there are whole fields of professionals continually working to learn more about disability and share evidence-based practices and empirical data to others as means of educating about disability, there is not enough attention to the voice (whether spoken or not) of real lived experiences.

 

Some of the most important take-aways from listening to these four podcast episodes include (but make sure to listen as we talk about these and others in much greater depth):

 

  • The ability to communicate through verbal speech is not an indicator for anyone’s capability or competence
  • ”Behavior” is always communication, whether verbal or non-verbal: be sure to listen to it and do the work to figure out what the person is communicating as opposed to what you think they are communicating that fits in nicely
  • Most of the ways adults they think they are supporting friendships are actually hindering them
  • Reliable communication is far more important than easy communication
  • Special education as a system can be dehumanizing and imprisoning; it is essential that we are all doing the work to change that!

 

My specific experiences that have lead me to these and the other take-aways I share within the Podcast and when I am presenting are not ones that teaching and other professionals in my life when I was in k-12 ever attempted to know, and vary greatly from what “best practices,” FBAs, and other means of data collection told them about me.  I spent many years of my life choosing to not talk or share about my experiences in special education because it was not a positive time in my life or something I particularly enjoy thinking about.  They were painful as I experienced them as a child, but my understanding of them and the damage caused throughout my k-12 experience are further highlighted for me as I live a continually more inclusive life.  I see more and more of what k-12 should have been for me, but was not.  And so I have started to share in hopes of sharing a different perspective, my perspective, to help those who love and/or work with children with disabilities, and especially children with autism or children who do not use verbal speech as their main mode of communication, begin to think more deeply and critically about what “best practice” might mean.

 

That being said, my perspective and experiences are just one.  I hope that my podcast episodes illuminate why hearing from the recipients “behavior management” and other supports is so essential and to offer a different perspective, one often never thought of by those on the other side of the situation.  One of the most essential components of being a quality educator or ally is to continually hope to know better so that you can do better! I hope you will continue searching for narratives by people with disabilities, and will leave you with a few others to check out as a starting place for your continued learning.

 

Thanks for listening and joining!

Brianna

 

 

Other First Person Perspectives:

 

Book: Communication Alternatives in Autism: Perspectives on Typing and Spelling Approaches for the Nonspeaking, edited by Dr. Edlyn Pena and including ten chapters, each written by an autistic self-advocate.

 

Website: United for Communication Choice

https://unitedforcommunicationchoice.org

 

Book: Fall Down 7 Times Get Up 8, by Naoki Higashida

 

Book: Plankton Dreams: What I Learned in Special Ed, by Tito Rajarshi Mukhopadhyay

http://openhumanitiespress.org/books/download/Mukhopadhyay_2015_Plankton-Dreams.pdf

 

Website: The Autistic Self Advocacy Network (ASAN), which has a wealth of resources available

https://autisticadvocacy.org/resources/

Youtube channel: https://www.youtube.com/user/autselfadvocacyntwk

 

Website: Communication FIRST

https://communicationfirst.org

 

Website: Actually Autistic Blogs List, which includes a list of blogs written by autistic people and family members of autistic people

https://anautismobserver.wordpress.com

 

Blog: The Autistic Hoya

https://www.autistichoya.com

 

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