Monday, April 28, 2014

We Always Liked Picasso Anyway Expressions of PosAutivity: #AutismPositivity2014

2014 is the year I started a library!  

Not just any library, but one focused on the ideas of autism acceptance, neurodiversity and disability rights.  I set up every other week to lend books to my local community that amplify Autistic and disabled voices.   When I first got the idea to open an acceptance library, I was a little intimidated by all the work that would go into this. It is a LOT of work.   I found, however, that following my passion for educating other people about the value of diversity and the worth and beauty of disabled lives has made all the work that goes into this actually FUN!

I love what I do.  

I love seeing people begin to understand autism and disability in new ways.  I love when people ask me for a specific therapy or parenting book and I explain that the mission of my library is not to fix something that isn't broken, but to celebrate Autistic and disabled lives.

 (FAQ Page for the Library)

 This is a very new concept for many.

I hope to make it a little less shocking and controversial an idea. Because as I have said before:

(Image of a blue/green square framed in olive green with black text that reads: : "Loving, accepting and valuing Autistic lives should not be considered a revolutionary act.")

 I hope to help other disabled people in my community to come to the place of acceptance and pride that I have found through finding and knowing my own Autistic community.   I hope that people will stop telling me they are afraid to label their children as Autistic, because being Autistic won't be something to fear.   I hope that when people walk into a bookstore and ask for books on Autism, they are not led to the parenting section, but to the Disability Rights and Disability Pride section.   My library will always reflect those hopes until they are a reality. 

And they will be.
I believe this because I see it happening every day. 

I look forward to the day when my son is an adult and Autism Acceptance is the norm,   I hope that ideas like my library play a little part in making that happen for the next generation of Autistic people. 

Autism Acceptance.  Neurodiversity.  

      (Image of a young Autistic boy next to a table with a selection of library books on autism, 
disability rights and neurodiversity)

Thursday, April 17, 2014

My son's library review of "Ed Roberts: Father of Disability Rights" by Diana Pastora Carson

One of the children's books we have available at our Autism Acceptance Lending Library is "Ed Roberts: Father of Disability Rights" by Diana Pastora Carson.  The book tells the story of Ed Roberts from his childhood, becoming disabled and his advocacy, activism and fight for access and inclusion.   Featuring beautiful and colorful illustrations by Patrick Wm. Connally, this is a wonderful introduction to the man known as the father of the disability rights movement.   This book also has a "symbol" guide near the back of the book to explain some of the symbolism in the illustrations and to open up a dialogue with readers.   This is ideal for a classroom discussion or one on one learning at home.

"They told me I'd be nothing but a vegetable.
Here I am an artichoke.
I choose to be an artichoke all prickly on the outside
with a big, tender heart."
                                 -Ed Roberts

This is my nine year old's review of the book:

My Review by F

Ed Roberts stood up for disability rights. Ed Roberts was not born with a disability but he became disabled when he was fourteen when he contracted polio. He had to stay in an iron lung. His doctors said he couldn't go to college or get a job or even get married. His parents were worried. He went to college anyway. He taught himself school through the phone to graduate from high school. He taught himself how to breathe different so he could leave his iron lung sometimes. He became the director of the Department of Rehabilitation after he went to college. He had to fight a lot when he was in college. He had to fight just to go there, for one thing. I think he probably saw a lot of unfairness and that made him fight harder. He fought all the time harder and harder. Not only that, he got his job being the director of the Department of Rehabilitation after they told him it would be a waste of money to help him. They said that because he was disabled. Ed Roberts proved that people with disabilities had their own rights. People with disabilities are as good as anybody else. Ed Roberts was important in  history because he fought for rights. Laws about disability rights are still evolving to this day. Because of the work he did, we are still fighting. Ed Roberts made life much better for us all.

Saturday, April 12, 2014

Sometimes, I Can't Talk

Talking is not something that I have ever been very good at.   When I am extremely overwhelmed, whether it's sensory stuff (usually lights or too much background noise for me), or whether it's just emotional overwhelm, talking is not something I do well.

I make noises, I even form words.  Except....the words I am saying are not the right words.  I can't find the right words in those moments, so it often comes out with me yelling or saying words that aren't what my brain is thinking    I feel a lot of pressure to talk in those moments because people want to know what is wrong.  There have been numerous times when I even say "I can't talk now" and I am ignored.  This just makes things harder for me.

The questions keep coming.

Talking to me.  Talking at me.

Talking.  Talking.  Talking.

I just want it to STOP.

Unfortunately, very few people in my life respect that I need this to happen so that I can calm down.

So, they continue to talk and ask questions, and pressure me to talk..... and I continue to become escalated and upset.  Because I can talk a lot of the time, they refuse to accept that I can't talk in that moment.  

Honestly, I feel like it's a really selfish thing on their part.  It shows a marked lack of empathy for the way my brain processes information.

It's also extremely frustrating and disrespectful to me.  

If you are talking or interacting with an Autistic person and they ask you to back off, with words, or unspoken language, you need to respect that.  

It's not okay to keep pushing.   Even if you don't understand it.  

Me not being able to talk at some times is not anything I'm doing to you.  It's not an attack on you.  It's not me ignoring or disrespecting you.  It's me doing the best that I can to take care of myself so that I don't escalate.  So that I don't melt down.   It would be really nice if you would let me do that instead of adding to my anxiety.

Acceptance means not just tolerating or acknowledging who I am.  It means that even when you don't understand my reactions or processing, that you respect it.

This is part of me.  It's not easy for me, but making it about YOU certainly isn't helping.  

Friday, April 4, 2014

How I Started An Autism Acceptance Community Library

I originally got the idea to create an acceptance library because of the lack of information available in my community about autism from the perspective of the real experts:

Autistic People

In addition to this, I have always felt that it's important to learn about the history of the disability rights movement and to understand the concepts of acceptance and neurodiversity.  I feel that those three things are crucial to creating inclusive communities that respect and affirm the value of Autistic and disabled lives.  

I started with an idea.   The second thing that I did was to write a mission statement.  It was short and simple, but it clearly laid out my goals and objectives with the library.  Having a clear mission statement kept me from getting sidetracked by other ideas and input as well.    

This was my simple mission statement:

The mission of the Ed Wiley Autism Acceptance Library is to promote understanding, acceptance and inclusion for Autistic people. Our organization is dedicated to the ideas of neurodiversity, social justice, Autistic/Disabled Pride and disability rights. The lending materials we offer will reflect the wide and diverse spectrum of autism and intersectional identities. We are working toward building an inclusive community and providing relevant resources and information for Autistic people, our families, friends and allies. 
The mission statement was also helpful  in letting community members know the intention of my library.  Creating it first was a way to state my goals upfront to potential donors.  

Then, I had to have money to purchase books.  This is where social networking is really amazing.  The majority of the money I have raised so far has been from a GoFundMe campaign.  That site DOES take a 9% cut of what you make, but I feel like it was necessary to use them to get the word out.  Once I made the fundraising page, and had enough money, I opened a bank account under the library name and was able to solicit donations privately in the community.  When the bank account was open so that I could take those donations, I then made a Facebook page for the library to update people about the progress, ask for donations, and signal boost important topics in the Autistic community that were relevant to the mission of the library. 

The next step is to get to know your community.  I needed a place to house the library on certain days.  I decided that this would be a mobile library, so that I could travel with my books to people to make it more accessible.  I still wanted to have a place that I could regularly set up and meet with people in the community.  My town has a great community center that allowed me to set up there a few times a month.  I also was in touch with several local disability advocacy organizations, just to introduce the library, to let them know it existed, and that it was a local resource on autism by Autistic people.  

The library is a project I am doing with  my son, but I also have had the support and assistance of many people along the way.  If this is something you wish to do in your community, don't be afraid to ask for favors.  I needed a logo, and I thought it would be neat to use a logo that incorporated AAC.  I asked around and one of my friends, who is an artist,  offered to screenshot an image on the AAC app on her iPad, using images that she created too.  I was really  happy with the result!  And if you are familiar with the Facebook page or have been to the library, you will see that because I put it everywhere!   

Once word got out about the library, several of my friends and contacts who are writers offered to donate books that they had written to the library.  I have also sent several e-mails to authors, including links to the Facebook and GoFundMe Page to ask for donations.   Many people asked me to create an Amazon wishlist so that they could send books directly to me.   A local friend has been helping me to organize a benefit show for the library.  Getting bands together, booking the venue and giving me information and advice on how to get raffle prizes (another great way to call on friends who are creative and want to donate items to raffle!) and what I need to do to make the show successful.    A local parent group who were excited about the library offered to sell bracelets and donate the proceeds to the library.  

 If you know someone who has a printing business or can give you a discount, ask them about helping you out too!  I have spent a lot of money on copies  (resource lists, copies of Nick Walker's "What is Autism?", kids acceptance coloring pages, flyers for the library and for some of the organizations I am a part of and endorse like Autism Women's Network and Parenting Autistic Children With Love & Acceptance, and materials from The Autistic Self Advocacy Networks Autism Acceptance  Month website).  It's important at least to me, to have something to give to people so that they can take it home and do more research and learning on acceptance, neurodiversity and the Autistic community.   

When I opened the bank account, I had to have a friend help me because I didn't fully understand the process of applying for an EIN number from the IRS (it's free and totally easy and you can do it at your bank when you open an account for your library!).   He also helped me to understand the process of registering the library as a non profit in my state (this is not the same as applying for 501c3 status).  Registering in my state only cost me $20 (though it varies by state).  Applying for tax exempt status is a lengthy and expensive process which I will eventually do, but at this time I am unable to.  So, I'm a legal non profit in my state, I just can't offer a tax exemption for donations.  I feel like the library is small enough that this won't be an issue for a while anyway.  

As I collected books, I had to find an easy way to catalog them.  I had stickers printed with the library logo that I put on all the books.  I created an old fashioned library system utilizing envelopes and cards in the back of the books for people to use to sign materials out.  I made the sign out cards out of basic index cards and used standard envelopes, cut in half and glued  in place on the back covers of the books.  Books that I have multiple copies of, I just numbered on the book and on the lending card.  I put the cards in a plastic recipe box to keep track of.   I also created an informational sheet for people to sign up to be able to check out books.  It is fairly simple, just verifying name and contact information.   It's all very low-tech!  

My husband purchased a used suitcase with wheels for me so that I could easily transport my books to and from the Community Center and to appointments.
I have many goals for the future, including finding ways to get materials in Spanish for community members who speak English as second language, using the library's name and funds  to host events to educate the community about Autism Acceptance, to be able to purchase films with the appropriate licensing fees paid so that I can lend them in the library, find ways to gather an "expert panel" of Autistic people to review books to see if they would be a good fit for the library, and so much more!   I'm so excited to watch the library grow and so proud to b
e able to bring a positive message of Autism Acceptance to my local community. 


Creating the library has been a lot of work, but I have enjoyed so much of it.  I just hope to continue to grow and grow and be a model for others to start acceptance libraries in their own communities