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Second Annual ASAN Gala — 11/15/2012

Second Annual ASAN Gala

Last night Karen and I went to the 2nd annual ASAN Gala at the National Press Club in Washington, DC. It was even nicer than last year’s event, which was also very nice. There was a reception with excellent food and drink, followed by the opening speakers.

First to speak was the evening’s host and MC, James Weisman, Senior Vice President and General Counsel for the United Spinal Association. I like him. He is a great speaker and tells funny jokes. Mr. Weisman has been doing amazing things for disability rights for many years.

Next, Ari Ne’eman spoke. Simply put, Ari is awesome. He is easily one of the best speakers I have ever seen. His passion for disability advocacy is infectious (in a good way) and I could see it spreading across the room as he spoke about how all autistics must be included in conversations about the autistic community, and not just those who are verbal and/or seen as “high functioning”. He is an inspiration to many people, including myself, and an example of how much can be done by self advocates. Ari was appointed by President Obama in 2009 to sit on the National Council on Disability and is the President and co-founder of the Autistic Self Advocacy Network.

Kathy Greenlee, Health and Human Services Assistant Secretary for Aging and Administrator of the Administration on Community Living spoke next, followed by Kathleen Martinez, Assistant Secretary of Labor for the Office of Disability Employment Policy. Both women spoke about how important it is for disability rights activists to work together and not just for their own particular disability. They made the point that when organizations work together, they have more power to create change.

We had a very good dinner of stuffed acorn squash for the vegetarians and chicken and green beans for the non-vegetarians, followed by dessert, which resembled a triangular brownie.

Madeleine Will was presented with the Ally of the Year Award, which is an award given to individuals who go above and beyond in serving as allies of the Disability community. Next, Steve Kapp was presented with the Award for Services to the Self Advocacy Movement, an award given to those who have helped to build the Autistic community through exceptional advocacy, ingenuity, or service.

The Loud Hands Project video was shown. It was so great that I embedded it into this post. The Loud Hands project is organized by Julia Bascom.

The night was a great success all around and we left feeling excited after hearing about all the accomplishments by ASAN and other advocacy groups and individual advocates this year. So many people working so hard and so continuously to make the world a better place, not only for people with their own particular disability of interest, but for all disabled people.

It was also wonderful to get to meet so many of the people that I have worked with or known only online and to get to see friends who I do not get to see very often.

Thanks so much to ASAN for another great gala!

Autism Is Gray — 11/01/2012

Autism Is Gray

Once again, it is Autistics Speaking Day. I want to write a post about the positive aspects of autism, but at the moment, it is hard. It has been almost 8 years since I found out that I was autistic. At first, it freaked me out because there is no cure. Eventually, I started to see the positive aspects and realized that I would be a different person if I had a neurotypical brain. I do not want to be a different person, at least, not for the most part. I used to wish there was a magic pill that I could take to make me “normal”. I still wonder if I would take it if one existed.

Even though things have improved quite a bit over the years due to medicine, learning coping skills, and most of all, help from people that love me, there are still times that I want that pill. I want it so bad. Sometimes I hate being autistic. I am not sure that it is okay to say that in the part of the autism community that I participate in most.

Over the past few years, the autism community has become divided. A VERY simplified explanation is that there are organizations like Autism Speaks, that do not have any input from autistic people and are very invested in searching for a cure. There is much more than that. Please do not support them.

On the other end are self-advocates who do not believe that autistic people need to be cured and who advocate for legal and societal change that will help them receive the services and accommodations that they need. As a perspective for people reading this post, I would definitely consider myself a self-advocate.

If there were a cure, I think individuals should have the option to choose for themselves if they want to be cured or not. That is a slippery slope when it comes to children, so honestly, I have no idea how something like that could actually work.

I am sometimes discouraged by the rift in the community, and sometimes confused by it. Sometimes, I wish that the conversation was more civil. I don’t think it is “us against them”. I don’t think that parents desperately looking for a cure for their child are evil, even if they hate autism. I do think that they need to be educated by autistic people and hope that there will be time when that will not be necessary anymore.

Autism can cause pain for both the autistic person and for their loved ones. It can be horrible and seem impossible to deal with at times for both the autistic person and their loved ones. There are also many positive things about autism and autistic people. We are a necessary part of the world. We think differently. Someone has to. It is hard to navigate a community where things sometimes seem so black and white. I think autism is gray.

My life is usually pretty good. Even when I was younger and things were so much harder, I was still lucky to have parents who loved me. In the 70’s, autism was not a common diagnosis. My problems were blamed on bad behavior, antisocial attitude, being lazy, not trying, whatever. In the 80’s, these diagnoses changed to things like schizophrenia, depression, anxiety disorder, etc. It wasn’t until the 90’s that someone suggested to me that I might be autistic and until 2005 for me to accept the idea as a possible reality. I think autism education, especially by the self-advocacy community is changing the way people think about autism in a good way, and that it will make it much easier for people to be diagnosed early and to get what they need. Maybe someday when parents get the news that their child is autistic, they will not automatically panic, fear the worst, and do everything they can to “cure” their child. Maybe they will accept it as a part of who their child is.

When I was younger, I would have done anything to be cured. I think my parents would have too. Even now when my life is so much easier, there are times when I just can’t stand it. I can’t stand being a prisoner of my own brain. I can’t stand not being able to socialize normally, read regularly, think clearly, and sometimes even speak at all. I do not know how to explain what that is like. A while back, I read a post by Savannah in which she used the phrase “A thousand hard things”. That is a good description of what it is like.

I really wanted to write a post for today. I think these posts and this day are very important. I hate that part of me had to think about the possible negative reaction from the people I consider part of my community, but I realize that the fact that I did makes it even more important for me to post it.