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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.

Unsolicited advice to NTs out there with partners on the spectrum considering a giant life change — 09/13/2012

Unsolicited advice to NTs out there with partners on the spectrum considering a giant life change

By Karen Hillman

Uprooted by PurpleLorikeet @ flickr

Note from LB: This article was originally published on the Autism Women’s Network website and is reprinted with permission from the author. It is about Karen’s and my move here last year from Oakland, CA. We are both still learning to adapt to our busy lives here, and for the most part, we have both managed to find ways to recharge and have fun along the way.

As some of you may know, last year my partner Lori, who is on the autism spectrum, moved with me from Oakland, CA to Baltimore, MD so we could be closer to my aging parents. There have been a lot of ups and downs. The biggest “down” that has had lasting repercussions was that Lori lost her SSI (Supplemental Security Income). With everything going on, we didn’t think about the fact that co-owning our house would be considered an asset. What this has meant is that she’s had to work more than full time hours to expand her freelance web business. That has put immense pressure on her to take on way too many things at once. For those of you on the spectrum, you can imagine how difficult this has been. It’s way too much for her to handle and yet she is handling it probably way better than she (or I) thought she could. I think the “up” is that she sees how capable she is of running her business despite the challenges. That said, it’s still way too much. With SSI she was able to work more or less as she needed for the most part. I don’t think things are sustainable the way they are – she’s working too many hours without getting time to relax and turn off. Her brain needs a break. The other “up” is that now people in this area are starting to value her services and get to know her and I think that is a good thing. Sometimes I have to (almost literally) drag her kicking and screaming to things I know she will enjoy, even when she is overwhelmed. Fear not, this rarely happens and I try hard to pay attention to whether I can push or not – sometimes I’m wrong and I blow it.  I just know it’s important for her to sometimes be around people she can relate to whether it’s others on the spectrum or other web developers.

Some unsolicited advice to you NTs out there with partners on the spectrum considering a giant life change: do your research – financial stuff especially but also what supports are available where you are moving? What can you do to make things as comfortable as possible? If your partner is on medication and diagnosed “officially” or not and gets some kind of services, what can you do to help ensure your partner can continue to get his/her needs met for meds, counseling, etc? What resources are available in the new area? Be extra gentle, compassionate and understanding that uprooting may have an especially big impact. Get support for yourself – of course, this is a big life change for you too and you have needs as well. Try to find breaks in the action – do some things together that aren’t about pre or post-moving tasks, regroup. Help your partner find his/her way around the new place in the way your partner learns best. Spend some time exploring together. Try to build new routines as soon as possible if your partner finds that helpful. Help your partner understand and become accustomed to the norms of the population in the new area. Remember that your partner also has a lot to offer. Be honest and communicate clearly about your own stress and what you need. Most of all, give yourself and your partner time to settle in.

Please feel free to post about your experiences with life changes and what has been helpful/not helpful for you.

Favorite Mac Tip of the Day > Rename Files from the Title Bar — 08/22/2012

Favorite Mac Tip of the Day > Rename Files from the Title Bar

Rename files from the title bar

Thanks to Devir Kahan for the tip!

Rename a file from the title bar
Rename a file from the title bar

Instead of having to locate the file in the Finder to rename it, you can now just click on a filename in the window’s title bar to rename it. This same sort of thing works for bookmarklets too. You can also move a file to another location from the title bar by clicking its name and choosing Move.

Disable Save Password Prompts in Safari 6 — 08/07/2012

Disable Save Password Prompts in Safari 6

Safari 6 has a feature that prompts the user to save passwords. A window pops up with the options to save the password or to never save the password for that site. I am pretty sure this feature has been around for a while, but in Safari 6 it seems to enable itself.

1PasswordI am a huge fan of AgileBits 1Password, an awesome password manager for mac, windows, iPhone, iPad, and Android that syncs saved passwords and other sensitive data across devices and seamlessly integrates with Safari, Firefox, and Chrome. I prefer to use 1Password in place of the Safari password manager.

I found it annoying that the ability to disable the Safari 6 password manager is not very obvious. I had been through the preferences several times without successfully disabling it when I finally googled and found the solution here: Safari 6.0 Tweak – Turn Off Save Password Prompts

The setting is not in the Passwords preferences, but rather in the AutoFill preferences. To disable it, you need to uncheck the ‘Usernames and passwords’ checkbox next to ‘AutoFill web forms:’. It seems logical now that I know where it is, but I had passed over that preference several times because I was looking for a way to disable the prompts without necessarily disabling the entire password manager.

Favorite Mac App of the Week: Boom — 06/06/2012

Favorite Mac App of the Week: Boom

Last October, I got a shiny new 15″ Macbook Pro and have been using it as my main work computer ever since. It is much faster than my iMac, and other than watching movies and working in Photoshop, I find that I prefer using it over the iMac.

The only thing that has really bugged me about this computer is that the sound sucks. In many cases, the volume is too low to hear anything above the outside street noise. At least it was until yesterday when I discovered an awesome little app called Boom.

Boom is a volume booster and equalizer for macs. From the moment I installed it, the volume on my system has been quite a bit louder. After turning on the built-in equalizer and setting it to ‘Vocals’, the sound was even better while watching a video podcast that I had not been able to hear earlier. The app is $6.99 and can be purchased from the seller’s website or from the Mac App Store.

Busy — 03/31/2012
One day I woke up and I was 45… — 01/29/2012

One day I woke up and I was 45…

I remember when I was younger, thinking that 45 was very old. The past few days, I have been thinking about what it means to ‘get old’. Is 45 old? 40? 65? 85? Does it matter? I don’t think it is a bad thing, and considering the alternative, it is an awesome thing!

I am not one of those people that wishes that I could be young again. It was hard enough the first time. There is definitely something to be said for ‘older and wiser’. There is no way to be younger and wiser because much wisdom comes from experience, and experience is something that is accumulated over time. I think age does matter, but somehow the reasons why have been strangely twisted.

It makes me sad that being old has to be such a bad thing in our society. Our culture is one that values youth over experience. There is a multi-billion dollar industry built on the idea that being old makes someone less valuable as a person. There are creams and treatments and washes and spas and even surgeries that can help people appear younger. The fact that it does not actually make them younger does not seem to matter. This is something I have never understood and something that really drives me insane if I think about it too much. Other cultures honor their elders and value the contributions they have made and the experiences they have to share. Why don’t we do that?

Going to stop thinking about that now. I had a great 45th birthday yesterday! Karen and I walked around at the harbor and saw lots of boats and big Navy ships. After that, we had birthday cake and played Skyrim for a while. Later, dinner of wine and pizza at Joe Squared. Awesome day, awesome night 🙂 I think I am the luckiest person in the whole world.

Video: The Dragonborn Comes — 01/09/2012

Video: The Dragonborn Comes

Beautiful rendition of ‘The Dragonborn Comes’ (Skyrim Bard Song and Main Theme) by Malukah.

You can download the mp3 for free at http://www.malukah.com/free/

Chords - The Dragonborn Comes
Chords - The Dragonborn Comes