I love research
I love information
I love learning
I hate to make mistakes
I hate to be wrong
I hate to be corrected
I sort, classify, categorize, compartmentalize, label and define anything and everything I encounter. It’s how I make sense of the world. I would guess most people do this type of thing, mine’s just a really intense version. I liken my brain to a giant cataloging system, you know like the old card catalogs you use to see in libraries. Do they even have those anymore: 3×5 index cards with typed information alphabetized and supported by the great Dewey Decimal System? Use to love those things!
Anyway… the idea of learning, whether through formal education or through whatever life throws at you, brings to mind the idea of transformation through information gathering and exchange. Love it! It’s about expanding your mind and being more open to and accepting of new ideas - things that have never been easy for me. And it’s about…
And to grow I have to be wrong. I have to make mistakes. I have to be corrected. Today I am going to share with you why I have learned to embrace these things. And it all boils down to
If you want to grow and change, you have to spend time outside your comfort zone. This Autistic person, learning to find satisfaction in anything less than perfection, is most definitely outside her comfort zone. And I’m not perfect, I get that, but my brain is under the impression that she is and that one day the rest of me will catch up. No worries. In real life I’m under no such illusion so I just let her dream
So much has happened in my life over the last year that I find myself wanting to grow and change (change? me? yikes!!) even though that means I’ll have to be wrong and make mistakes sometimes to accomplish these goals!
It is September 2013. One year since completion of my first book, Black and White: A Colorful Look at Life on the Autism Spectrum
And ohhh, how I’ve grown.
I finished Black and White at the same time I began the Virginia Board for People with Disabilities (VBPD) Partners in Policymaking Program (PIP). I
think know that had I finished the program prior to the book, it would have read a bit differently. Not much of it, I still feel the same about autism: Autistic and happy to be so; not looking for a cure, and so on. But the way I viewed some things and definitely the way I worded them would have changed.
For instance, I would have used the word disability. You see, I began the PIP program thinking that my kids and I didn’t have disabilities, that we were just different. Yet I concluded my PIP training knowing we are different, but at the same time, that we do have disabilities. And I addressed that here.
So I was wrong.
And PIP helped me grow.
And while this whole PIP thing was going on, I began to meet other Autistic people through social media (Twitter, Facebook, etc…). And it was A-M-A-Z-I-N-G! Meeting other people with whom I share a neurology was seriously the cat’s meow. I had only met a few Autistics before - brief meetings with out-of-town folk – so nothing to really build on. Now, all the sudden, I was meeting them daily through Twitter. And we were becoming friends!! I was able to learn so many things about myself through my new friends and I was in awe over it. These people understood me! They understood where I was coming from because we were all on the same train, just in different seats. All Aboard!
And my Autistic Friends were helping me grow.
Told Ya’ So
And then something happened that I didn’t think would. I was told it would happen, I just didn’t believe it at the time.
Now I’m a believer.
The wonderful people that run the PIP program assured our class that for whatever reason we originally applied to the program: the cause or disorder or disability or human rights issue or system/services issue or in my case autism advocacy… by the time we graduated we would become advocates for ALL these things and much, much more.
And I didn’t believe them.
And I was wrong.
And I grew.
The 8 months I spent in the PIP program, in addition to branching out into social media opened my eyes… WIDE. It was no longer only Autistics that I was advocating for. It was ALL people with disabilities. And then it wasn’t just about disabilities, it was about human rights. I was no longer advocating just for autism, I was advocating for disabilities rights! Human rights! And autism was only a part of it along with many, many other things.
I entered PIP not knowing the terms self-determination, presumption of competence or person-centered planning. I talked about those things here. I entered PIP not knowing what invisible disabilities were, even though all three of my kids and I have them! I met Autistic advocates, Autistic activists and our allies! I met disabilities rights advocates and human rights activists. And everything I learned from these new-found resources and friends supported and built on everything I had learned in PIP. And just as I would have made changes to my book, looking back at some of my old blog posts, I would have penned them a bit differently as well…
because I’ve grown.
Oh, The Shame
I did feel shame for a bit over everything I had learned. Thinking to myself that I should have known better! The shame of ignorance and having made it close to four decades never once questioning the state of disabilities rights or human rights (I talked about that here)…
Until I had children with disabilities. Until I was diagnosed with disabilities.
And then I had to question everything.
I felt ignorant and embarrassed. I didn’t harbor these feelings for long (thank god, because I really hate feeling badly). You see, I came to the realization that I thought the way I did because that is the way I was educated - or not educated, really - about disabilities. I never learned from people with disabilities, I was ‘educated’ through an unequal, biased system comprised of non-inclusive schools/communities and based on double-standards. I wasn’t a bad person. Or a mean person.
I was an ignorant person.
After acknowledging that, the only shame would be if I chose to stand by and do nothing. Because that’s what I had been doing prior to my education on advocacy, activism, disabilities and human rights. Nothing.
And that’s not growing.
What’s The (written) Word?
I have chosen to put my thoughts, feelings and beliefs out there in writing. Yikes! I will say some things - I hope not too many - that I’ll look back on in 5 weeks or 5 months or 5 years and ask myself…
What the hell were you thinking?!!
And that’s ok, because I’m not perfect. And I am still learning. And I will make mistakes because I don’t know everything - and I never will. But I’m willing to put myself out there, in writing, because it matters: Education, ALLY, Self-Determination, Inclusion, Accommodations, Presuming Competence, Communication, Disability Rights, Human Rights… ALL of it. And I will do my best to write with respect for other human beings, whether I agree with their point-of-view or not, because that is important, too.
So maybe what I’m trying to say in this blog (this post!) that seems to be growing in several different directions is:
bear with me.
This blog, the magazine articles and my book - soon to be books - are out there for anyone interested. And I hope they have meaning. And I hope at least one person reads and exclaims: “Ah-Ha!” or “Me, too!” or “YaY!” Because I have learned/continue to learn so much and I want to share it with you. And I hope you’re willing to accept a mistake now and again and understand that I will always write with the best intentions. It’ll never be perfect (shh brain!) and that’s a good thing because it means I’ll never stop
G R O W I N G