Person First vs Identity Labels: Which Do You Use?

HELLO_I-amIn an autism awareness conversation, the question is asked, should we say a “person with autism,” or an “autistic person,“ or an “autist?” How about an “Aspie” versus a “person with Asperger’s?”

My take: whatever that person wants. Not everyone agrees with me on this. Yes, it can get confusing, and it’s hard to keep track of individual preferences. A large number of people believe we should adopt the one, best way and stick to that. But what is that, and who gets to decide?

A pattern emerges on whether or not “person first” language is preferred (a person with ___). If the person sees the label as part of his or her identity or sense of self, then wearing the label is more likely the choice; if the label is seen as an unfortunate condition or burden, then it is more secondary to the person.

Sometimes it doesn’t matter. For example, you could say that I am a person with synesthesia, or that I am a synesthete. Since the implications of synesthesia are typically considered benign, most synesthetes are fine with either phrasing.

Other times, it does matter. A person with gastro-intestinal disorder, meanwhile, would likely find it absurd to be given an identity label for this (and what would that be? A gastrite?). On the flip-side, a person who identifies as an Aspie might find it undermining to be called a person “with Asperger’s”, or even more so “with autism” if being an Aspie is part of his or her core identity. It can feel similar to saying one has an ethnicity versus is an ethnicity. For example, I will say that I am Celtic, but that I have other ethnic heritages that are part of me genetically but less of my identity.

This pattern isn’t perfect. People have varying opinions about whether a condition or set of traits is a “disorder” and even those would who label it as such might still see the condition as part of who they are and own that identity. It can also serve as a way of seeking camaraderie and support from others who share the label. An example of this would be the term Lupites for people with Lupus, which has caused some amusing confusion among roleplaying gamers. I don’t know of a single person with Lupus who would choose to keep the condition, but it can definitely define a person in profound ways, and a tribe of others sharing that label helps.

So what can you do to make sure you phrase things to never insult anybody? First, I’m pretty sure this is impossible. We can, however, do our best while also being patient with each other in the process. I tend to use the pattern described above, which relies on my biased perspectives. I then adjust when I realize the predominate preferences of a group, and then adjust again for individuals regarding their own personal identity.

It’s not a perfect solution! What are your thoughts on this? Do you have any strategies to suggest? What about examples from your own experiences?

 

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Personalized Education Philosophy and Goals

PEG_Display_logo_transparent background smaller square.fwEducation’s purpose is to empower students to find their own paths to their own dreams; to create life-long learners who are prepared for both the modern world and the future; and to empower individuals to make a positive impact in the world.

This statement tops the list for the Personalized Education Philosophy, a 10-point list I created during a curriculum studies course when I was asking the question, “How do we prepare students for a future we can barely imagine?” This is what happens when you ask such questions in a grad-level course. They turn into assignments. Intriguing question Ms. Excell. Now what’s your answer?

My answer wasn’t to stop with the 10-point philosophy but to create Personalized Education Group with my business partner Chris, along with other carefully-selected educators to complete the team. We created an international online K-12 school, all governed by the tenets of the Personalized Education Philosophy presented here.

Education’s purpose is to empower students to find their own paths to their own dreams; to create life-long learners who are prepared for both the modern world and the future; and to empower individuals to make a positive impact in the world.

To this end, a personalized education program is student-centered; a student’s educational program is tailored to the student’s learning styles, interests, current skill levels, and personal goals.

Learning is competency- and mastery-based, allowing for extra time and assistance to master concepts a student finds difficult, while also allowing the student to move quickly through previously-mastered material, and eliminating arbitrary limitations on student progress.

However, as Dewey notes in Democracy and Education, “not the target but hitting the target is the end in view,” so more important than learning specific concepts is learning how to learn, and gaining competencies that will aid in the hitting of many targets, both current and those yet to be imagined.

Therefore, education must be forward-leaning, recognizing that the “real world” for which students are being prepared is dynamic, with exponential changes especially in technology.

To adequately prepare students for a future that is difficult to even imagine, a personalized education program places the greatest value on creativity and the ability to engage in independent, critical thinking.

Students are guided to become self-cognizant, life-long learners prepared not just for today’s world but equipped to continue learning for whatever the future holds.

As such, a personalized education program is student-driven; students take an active role in their education, from the development of their education plans to collaboration with course instructors.

Instead of taking authoritative roles, or seen as the sole purveyors of knowledge, instructors are instead mentors, offering guidance and feedback while respecting the diverse needs and goals of each student.

Students also learn to identify and understand cause-and-effect relationships, recognizing connections that span and go beyond content areas, and engage in proactive behaviors leading to personal development and engagement in the service of their community and beyond.

The philosophy was written for longevity.  That means that it could be applied in different situations in different ways.  The goal is to empower personal agency, and the scope and form this takes can vary for each individual.

My team and I created a learning model, and then a school based on that model: Christa McAuliffe School of Arts & Sciences.  The following describes the philosophy as it is interpreted and used by us.

Student-Centered

A personalized education program is student-centered — tailored to each student’s learning styles, interests, current skill levels, and personal goals. Students are motivated to learn when they feel that the learning is valuable — the “why do we need to know this stuff?” question — and when they feel that they can be successful with the learning task. Aligning a program to a student’s interests and goals increases a lesson’s relevance, and value, for that student, and tailoring the program to a student’s current skills and learning styles increases student success.

Competency- and Mastery-Based

Learning is competency- and mastery-based, allowing for extra time and assistance to master concepts a student finds difficult, while also allowing the student to move quickly through previously-mastered material, and eliminating arbitrary limitations on student progress. Is a student who passes pre-algebra with a 60 percent, sufficiently prepared to learn algebra? Investing time to secure a strong foundation at one level will increase success at greater levels. Current technologies facilitate designing instruction to allow for students to be at different places at different times, and to learn in a variety of ways. This is accomplished through clear goals, multiple options for learning those goals, followed by multiple options for demonstrating that learning.

What’s the Target?

As Dewey notes in Democracy and Education, “not the target but hitting the target is the end in view,” so more important than learning specific concepts is learning how to learn, and gaining competencies that will aid in the hitting of many targets, both current and those yet to be imagined. The world is in motion, and the information that is true or valuable today could be obsolete tomorrow. Governments rise and fall, old ideas are challenged, new technologies emerge — all impacting how the world does business. Students must be prepared with the ability to learn, critically evaluate, and apply new concepts that come their way.

Forward-Leaning

Therefore, education must be forward-leaning, recognizing that the “real world” for which students are being prepared is dynamic, with exponential changes especially in technology. Think about how much technology has changed over the years. Ever hear of punch cards for computer programming? Now we have marvels such as the Allosphere at U.C. Santa Barbara, allowing a team of researchers to walk into a sphere-shaped virtual reality to explore things such as the human brain through multiple senses, an artistic mix of visual effects and music. The world for which we are preparing high school freshmen will not be the same by time they graduate, and even more changes will take place by time they graduate college. A school’s education program must be fluid, ready to shift and change to ensure that students have the current knowledge and skills of today.

For example, in an online high school, students from several countries spanning multiple time zones can attend a live homeroom session using webcams, audio and a virtual whiteboard. Meanwhile, students must be empowered with the thinking skills to remain cutting edge.

Creativity and Critical Thinking

To adequately prepare students for a future that is difficult to even imagine, a personalized education program places the greatest value on creativity and the ability to engage in independent, critical thinking. The title “Information Age” does not begin to describe the infinite amount of information available today. Students need to analyze and critically evaluate information, question what they are learning instead of assuming anything is true, and creatively synthesize across disciplines. Bloom’s Taxonomy was updated by the American Psychological Association to have a new level of thinking at the top of the pyramid: creating. Schools cutting art programs are possibly eliminating the most important aspect of a student’s education. It was a creative thinker, orchestrally-trained composer JoAnn Kuchera-Morin, teamed with other creative thinkers — artists, scientists, and engineers — who created the Allosphere. It will be the creative thinking students who continue to push us forward, defining the future.

 Self-Cognizant, Life-Long Learners

Students are guided to become self-cognizant, life-long learners prepared not just for today’s world but equipped to continue learning for whatever the future holds. Students must gain awareness of their own learning. If they are struggling, empowered students seek additional help or request alternate approaches. They develop strategies for working through challenging learning activities and develop study skills that best align with their learning styles. This self-awareness and skills set is essential for continuing to learn new concepts as the future unfolds.

Student-Driven

A personalized education program is student-driven; students take an active role in their education, from the development of their education plans to collaboration with course instructors. This takes student-centered education to the next level by putting students in the driver’s seat. Ultimately, if the goal is to create independent thinkers and doers, then we need to empower students to be part of their own education program. Younger students and those new to a personalized education program tend to need more guidance, but students increasingly take more responsibility in creating meaningful educational experiences that align with their goals and interests.

Teacher’s Role

Instead of taking authoritative roles, or seen as the sole purveyors of knowledge, instructors are instead mentors, offering guidance and feedback while respecting the diverse needs and goals of each student. We cannot limit students to only that which we know, potentially dooming them to archaic thinking. Instead, we must free them to seek their own purposes in this world, and the teacher’s role is to guide students in accessing, evaluating, and using the increasing amounts of information and resources available to them.

Making Connections

Students learn to identify and understand cause-and-effect relationships, recognizing connections that span and go beyond content areas, and engage in proactive behaviors leading to personal development and engagement in the service of their community and beyond. This last tenet is the culminating goal of the philosophy. Students gain an international perspective by interacting with fellow students from around the world, collaborating on creative projects that involve critical thinking and the use of current technologies. They make cross-discipline connections, with social sciences informing one to be socially responsible with the hard sciences, with art as a valid means of exploration and expression, and with a holistic view of the world created through questioning, exposure to varied cultures and ideas, and an openness to learn new things. The result: students are empowered to be world citizens who will lead us into the future.

What’s Your Vision?

As noted, the above describes one approach to personalized education.  Do you have an idea for a program – whether it be a learning center, school, mentoring program, or even a single class? If so, either find me at an event or contact me directly.

 

The original version of this article was written for SEEN Magazine, March 2010:

Preparing Students for the Future: Creating Personalized Education Opportunities

Humorous Aside: I somehow managed to write this article while battling the swine flu – a very intense, painful flu for sure!  It meant waking up to write for about an hour, then sleeping several hours, and then waking for another hour to drink water and write some more.  After completing the article and sending it in, I told my business partner Chris, “I think I wrote an article, but I am not exactly sure.”  That created a little anxiety for poor Chris, but it seemed to turn out fine.

Questions from Radcon 6C – from Unicorns to the Location of Double-sided Tape

Radcon 6C: Ammie Hague (aka Fairy Princess Lolly) and Aurora Miller

Radcon 6C: Ammie Hague (aka Fairy Princess Lolly) and Aurora Miller

Instead of writing a summary of Radcon, I am going to present a collection of questions asked. Some of these were overheard in passing, others asked in panels, and some during social events. And yes, many teachable moments happened. Enjoy!

  • What’s a unicorn?
  • What’s a brony?
  • If so many people in the Tri-Cities are so gratefully relieved to have Radcon for a weekend, why can’t they just change the local culture to be more like this year-round?
  • Why do autistic people lack emotions? What? What’s neurotypical syndrome?
  • Since our society has changed so much regarding property ownership and other traits that led to monogamous marriage, might this allow for more diverse family structures such as polyamory to return? Cool! How long will that take?
  • In what ways is religion presented in fantasy literature?
  • I want to propose to my girlfriend and… (this was a long one, so I’ll just let you know that she told him yes!).
  • But why is that called a unicorn?
  • How can we increase diversity in fandom?
  • Where’d you get your [insert costume/clothing item]?
  • Anybody have any double-sided tape?
  • Where is the Fan Room? And why do they call it the Fan Room?
  • Why is all the tea gone?  Is there rum?
  • Are you sure unicorns are that rare?
  • Are labels such as “Aspie” or “dyslexic” or “geek” helpful, or do labels cause their own set of problems?
  • Shouldn’t we prepare kids for the real world?
  • What’s the real world?
  • How can we change the world?
  • How do we discover a more accurate telling of history? How do we know?
  • Your wife keeps the money? Where is your wife?
  • How do we know that no means no, or that yes means yes? Even with that costume?
  • So, there are some unicorns out there, right? They do exist? Why are you laughing…?
  • Anyone interested in volunteering to help with the next Radcon?

Okay that last one was my own question.  If you want to help, or if you have feedback or ideas for programming, please visit Radcon.org to email Programming to let them know!

 

Aspies Don’t Lack Empathy – Just the Opposite

Art work by Aegis Mario S. Nevado

Art work by Aegis Mario S. Nevado

A common trait that people associate with Asperger’s is the lack of empathy.  This misconception could be due to “normal people” lacking the ability to empathize with Aspies.  Chew on that irony for a moment.

First let me give you two sources who can explain this idea better than I, and then I will give you a glimpse into my own brain.

This has been an emotional topic for me. I am neurodivergent, and my world is rich with sensory perception sensitivity, compounded by forms of synesthesia and living as an empath. Sometimes I feel so much that I have to brace myself. It’s not just my own emotional and physical feelings, but those of others. If I care about the person, it’s intensified, but even a stranger’s emotions can touch me. And I mean touch me — where I am feeling the joy or anger or – sometimes – physical sensations that are supposed to stay put inside of that other individual. Add in synesthesia, and my eyes can strain from the changing lights that surround each person.

If I ground myself against the emotions, or motion with my hands as if to push away the feelings, I can come across as uncaring. Sometimes I have to the leave the room, regroup, and come back prepared for what I am walking into.  And sometimes I even feel anger and hurt at being assaulted by that other person pushing his or her emotions onto me, worse when there’s a demand that I only listen and “take it” instead of letting me try to fix it, to eliminate the source or to heal the person so we can both stop hurting.  However, sometimes it is important that the person go through that whole process, and it also isn’t always my place to “fix” anything.  Luckily there is a way I can meet this need without such harm to myself.

When allowed to be who I am and to use the strategies available to me, I can be my most powerful self – the self who is loving, nurturing, mentoring, healing, and creating.  It just needs to be on my terms, and – with the help of others able to empathize with me – I am learning what those are.  For example, I have honored some requests by parents to advocate for their student in a public school, and this usually involves sitting in a room with emotions running high from the teachers, parents, and especially the student, making sure everyone’s feelings and needs have been heard and understood. I can calmly direct that conversation with a balance of using empathy to guide me but, as far as people in the room can see, a gentle but solid power. They don’t know I’m trembling inside as I take each blow. If I weren’t allowed to put on my armor beforehand, I wouldn’t be successful.

A former boyfriend once described it this way. He sat across a table from me as he expressed anger, and then apologized when he realized he had been mistaken – a fact I knew the whole exasperating time as I tried to “just listen” to him, as he insisted, instead of eliminating the source of his hurt, which I finally did by saying a single sentence.  He described my demeanor during it all as calmly keeping multiple swords sheathed at my belt – a power kept in check. What he didn’t realize was that those were swords I kept collecting from him, sheathing them one by one in an effort to keep us both from being hurt. Either he was going to let me get a word in edge-wise or I was going to (figuratively) whack him over the head with the next one that came my way. Which pretty much describes our breakup.

I’m a messy empath, but I have learned much. The relationship noted above about killed me but served as the catalyst for me to become stronger and a better partner for my current relationships – all of which are a source of loving support and inspire me to be a better person. They are self-aware individuals who value the same traits that befuddle neurotypicals. It finally occurred to me that I had to be picky when it came to dating (and shouldn’t everybody do this for themselves?).  For me, I realized that I can only be that intimate with somebody who is highly capable of empathy, and I was more likely to find that among other neurodivergents. Including Aspies.

 

 

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What is Your Art?

Tamra Excell with Kevin Wiley, dressing up for Radcon 6C

Tamra Excell with Kevin Wiley, dressing up for Radcon 6C

About five years ago, I made a five year plan. A note on the plan said this: find freaks and geeks. I wanted to connect with more people who sometimes see their own society through anthropologist eyes, on the outside looking in.  It’s a perspective that helped a team of educators see the big picture and create a student-centric school that paved the way for so many more.  We earned accreditation for the school to serve “outside the box” students and their families who didn’t want to be arbitrarily limited in life.

After that, I wanted to find others, to make sure they knew we existed. We have different types of “freaks” on staff, unique individuals with their own passions and talents, so each could do a part to bring others into our collective family.

For me, that journey would include mindfully entering the world of the sci-fi/fantasy conventions and festivals – not just as a visitor, but making my place as a member. Right now, I am writing you from Radcon, the Pacific Northwest’s second-largest sci-fi/fantasy convention. Soon, I will be on a panel to talk about Neurodiversity in Geek Culture. I am joined by many others, including Luna Lindsey –  an Aspie who has found herself increasingly advocating for other autists. I have learned much from her about Asperger’s, which has helped me understand more about my oldest daughter as well as myself.

Other panels include the Rewriting of History, Religion in Fantasy and Science Fiction, and a panel by the brilliant Kevin Wiley called Making Your Own Way – about living the creative life and making a living at your art. “Art” here is what you decide it to be.  Each of you has an “art” – just ask yourself what makes your heart sing, and you will find the answer there. Sometimes this takes some exploring, and such is the adventure of life! As part of that adventure, go find others who “geek out” about that same art, and this is where you will find your freaks.

 

So what about you? Who are you? What is your art? How can you make your own way to live your life according to your passions and talents?  Let’s explore!

 

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