Traveling Show

I got my first good look at Atlanta taking the long way into Decatur, 75/85 to I-20, Moreland, and Dekalb through interesting parts of town.  That was one of my worst days, but those roads are where my life happens, now.  Downtown, as seen on a spring night from the window of a car around the cultural speed limit, looks like home.  I see it at least once a week.  I hate the way they light it up blue.  The next time I make the trip home from Douglass, those insipid floodlights will be gone.  They were always jarring.

The skyline was an unpleasant reminder of times I would rather forget, but it never ruined my night.  They were distant.  The radio, the cushy, leather seats, the engine’s hearty rumble, the beautiful tuba were more real.  So was the rehearsal that prefaces the drive.  I like musicians, especially tuba players, because no one cares what I am.  The band has substance.  The section is alive.  The lights had ninety seconds.  People who care more about what I do and choose to be than what I was born had two hours.  These things were before blue, or any, light bulbs.  The needs for community, expression run marrow deep in humankind.  Bread and roses, people of goodwill, and implausible tuba sections will outlast the pathetic display.  In the mean time, I am safe. 

What really bothered me about the lights is that not everyone is.  They represent marginalization on a long spectrum.  At one end, in my life, the discomfort is an inaudible hiss if the radio is on.  It usually is.  At the other, there are murders and apologists.  Between, there are dour group homes, people who are about to age out of public school without a clear next step, kids whose parents are trying to ‘recover’ them.  I spoke to one such mother. in April.  She wanted to know how I got well.  I said I was never sick, suggested that it was possible her son would grow up to feel the same way.  The lights represent a narrative that we are suffering, waiting at the doorway of personhood for someone to let us in.  It is a compelling story, wise researchers and brave, devoted relatives saving the helpless and ill.

Inclusion is an inherently harder sell.  There are no heroes, just people quietly making room.  The medical model is the stuff of bestsellers.  The social model is the lady down the street hiring a guy with an intellectual disability to stock shelves in her store.  The lights on I-20, the DSM V controversy, and articles like this remind me that society is wrestling with the question of normalcy: what does it mean to be sick vs. well, broken vs. whole, productive vs. useless?  I presume competence.  Anything else leaves precious human potential untapped.  I am not going to argue with someone who feels healthy, whole, content as they are.  I am not going to decide what kinds of people to exclude from the human community.  I do not presume to be wise enough to know what innate ways of being should be cured.  I know I want mine left alone.  Blue lights were a reminder that not everyone agrees.  There are people who think I, by definition, cannot answer the question.

These individuals annoy me, but there is nothing they can do to me.  My competence at things society values, relatively good executive functioning, car title, driver’s license, bank account, voter registration, friends, contacts, and acquaintances cement my status as someone who can decide things.  No one is going to do anything to me.  I had to earn acknowledgement as fully human, but I got it.  Were it otherwise, I doubt the lights would have been mildly unpleasant.  They might have been frightening.

As the Autism Society asks for compromise and common goals, a lawyer in my intended field is ranting in my inbox.  Two days ago, I politely asked someone she likely follows to provide evidence for a sweeping generalization he made about autistics.  I did not call it a sweeping generalization, nor did I say it was stereotyping.  I was careful to keep judgmental language out of my inquiries.  I wanted to learn something if I was wrong, correct misconceptions if I was right.  I asked if he had data.  Now, I have a shower of tweets, an email in excess of two hundred words, and a second whose length I do not know because I have not yet opened it.  Choice quotes from the first include:

• “First off, no fucking shit” “
• You cannot get insurance to pay for anything if you have autism, because research needs to drive services (as you and Autism Speaks would have us believe) so if you deny that there can be both obesity and autism (typical intellectual functioning and executive function deficits, poverty and autism) then you justify continued exclusion based on autism when you would be otherwise eligible without autism (obese only).”
• “You claim Autism Speaks does nothing for you.  Autism Speaks is responsible for spending every penny raised for autism creating ‘studies’ that don’t say a damn thing. You claim to know that and yet you demand studies that will also not say a damn thing”

I am not sure how obesity comes into it.  She may have been trying to use it as an example to support a point I cannot find.

The conflicts of autism politics have reached a level at which a seasoned professional is sends incoherent hate mail over a stranger’s mild disagreement with an acquaintance.  It is ugly, unproductive, and avoidable.  These things will stop happening to me the day I give up reaching across the autism world’s borders.

I try to treat Autism Speaks supporters, anti-vaccine ideologues, and people whose words on autism sting as reasonable people even as I unequivocally disagree with what they say.  I reach out to them.  I look for willingness to learn, try for common ground, work through substantive differences.  They say disagreement means unconcern over dead autistics who should be alive.  I hear that I care nothing for anyone more visibly impaired than myself.  There are just enough attempts at rational discourse to keep me trying.  There are also the Internet’s potential observers.  It is never bad to look calm, sensible, polite through someone’s inexplicable rage.  There is Brenda Rothman.  There is a mother I know IRL.  We can have a conversation.  My faith in the autism community is never extinguished.  I know people in every segment of it who want autistics, and everyone, to have access to the makings of a good life.  Dialogue is key.  Regardless of other differences of opinion, I am glad to have it with anyone who can accept the following:

• My right to exist and that of others like me;
• Our humanity and human rights;
• That discussions of us are only legitimate when we are involved;
• That the status quo is unacceptable.

However, I will be here less if I can get people together.  I want to do good in my own community.  I have burned through a laptop keyboard striving and arguing.  I would rather raise funds for assistive technology in schools or keep Atlanta’s ongoing transit debate conscious of non-drivers with disabilities.  I will spend more time working parallel to the other side, less engaging them.  I will not miss the incessant fury when I am with it less.  Fewer outlandish accusations will make for better days.  However, I will be sorry to see less of rare moments of connection in the space between entrenched lines with others who wanted more than a shouting match.

passionatelyrevolt:

iamthethunder:

passionatelyrevolt:

For my birthday on August 19th, I’m asking my friends and family for a special gift: help me raise $1000 for Autism Speaks Inc.

My Birthday Wish is in honor of Tina (Life), my sister-in-law who is autistic.

I chose Autism Speaks Inc because I greatly feel that Autistic adults and children especially lack the proper care and guidance through the Board of Education. Those who struggle with autism greatly need more qualified professionals and educators to guide them, as well as funding for the many non-profit organizations that help low-income families and individuals with proper care needed for their autistic loved ones..

Please consider giving to my Birthday Wish, and together we can raise funding for global biomedical research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society and to bringing hope to all who deal with the hardships of this disorder.. If you can’t give now, I’d really appreciate if you’d share this page with your friends and family.

Thanks a bunch! Please reblog/share this with anyone and everyone you know.

Please click the link below to make a donation. Any amount is welcome, big or small!

http://wishes.causes.com/wishes/477273

The problem is that Autism Speaks does nothing to care for your sister-in-law.  This is how they spend their money:

http://www.mediaite.com/tv/first-autistic-presidential-appointee-lambastes-joe-scarborough-and-autism-speaks

Mr. Ne’eman was using their own financial data, which I have seen.  He is correct.  You can look it up on their site.  Another problem with Autism Speaks is that the autistic adults you want to help mostly loathe the organization.  Read these:

http://goldenheartedrose.tumblr.com/anti-autismspeaks

http://www.dailykos.com/story/2007/05/19/336513/-An-Autistic-Speaks-About-Autism-Speaks

There are innumerable articles and blog posts like these.  Some are newer, but these are the best I have seen.  Read this, too:

http://www.thinkinclusive.us/why-autism-speaks-hurts-us

It is more recent and by another great writer.  Our biggest problem with them is that they perpetuate ableist notions of our incapacity, make tragedies of our lives, and ultimately want a world without us.  They want a world without your sister-in-law, too.  This is an admirable idea, but they are a bad charity.  Donate to the Autistic Self Advocacy Network, The Arc of the United States, or A.skate instead.  If you want to help children, you could also ask special education teachers in your town what they need.  If you want to help adults, consider helping an unemployed autistic find a job.

This is really unfortunate for me to see. I know that this fundraiser does not help her directly, but she asked me personality to do this for her, so out of the kindness of my heart I am doing it and keeping her in the loop while I do it. She genuinely wants other kids like her to get the same kind of help that she and my mother-in-law do. The facility is aimed at low-income families and there isn’t many programs like this one in New York City.

The staff at the facility where she lives, located in Long Island, NY has directed me to Autism Speaks. I do not know if they’re aware of any of this. But, that facility in particular receives funding from them. I could share this information with the staff and pick one of the other organizations you’ve mentioned above, but I probably don’t want to spoil it for Tina(Life). She’s really enjoying it and wants to help the organization that helps her.

This is my first time ever starting a fundraiser. My husband is a Special Needs educator specializing in autistic children in public schools. I have only worked with the children and Tina directly through the different organizations she’s been with.

I appreciate the thoughtful response.  The staff may not know.  They also may not care.  Even though I have expressed the opinion of most autistics I know, we are often treated as fringe radicals for holding these opinions.  We are often ignored.  Maybe you need to have a discussion with her.  I do silly things sometimes because it makes a loved one happy.  If they did nothing, I could understand your decision to humor her.  The problem is that they would not waste your money.  They would use it actively causing harm. 

passionatelyrevolt:

For my birthday on August 19th, I’m asking my friends and family for a special gift: help me raise $1000 for Autism Speaks Inc.

My Birthday Wish is in honor of Tina (Life), my sister-in-law who is autistic.

I chose Autism Speaks Inc because I greatly feel that Autistic adults and children especially lack the proper care and guidance through the Board of Education. Those who struggle with autism greatly need more qualified professionals and educators to guide them, as well as funding for the many non-profit organizations that help low-income families and individuals with proper care needed for their autistic loved ones..

Please consider giving to my Birthday Wish, and together we can raise funding for global biomedical research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society and to bringing hope to all who deal with the hardships of this disorder.. If you can’t give now, I’d really appreciate if you’d share this page with your friends and family.

Thanks a bunch! Please reblog/share this with anyone and everyone you know.

Please click the link below to make a donation. Any amount is welcome, big or small!

http://wishes.causes.com/wishes/477273

The problem is that Autism Speaks does nothing to care for your sister-in-law.  This is how they spend their money:

http://www.mediaite.com/tv/first-autistic-presidential-appointee-lambastes-joe-scarborough-and-autism-speaks

Mr. Ne’eman was using their own financial data, which I have seen.  He is correct.  You can look it up on their site.  Another problem with Autism Speaks is that the autistic adults you want to help mostly loathe the organization.  Read these:

http://goldenheartedrose.tumblr.com/anti-autismspeaks

http://www.dailykos.com/story/2007/05/19/336513/-An-Autistic-Speaks-About-Autism-Speaks

There are innumerable articles and blog posts like these.  Some are newer, but these are the best I have seen.  Read this, too:

http://www.thinkinclusive.us/why-autism-speaks-hurts-us

It is more recent and by another great writer.  Our biggest problem with them is that they perpetuate ableist notions of our incapacity, make tragedies of our lives, and ultimately want a world without us.  They want a world without your sister-in-law, too.  This is an admirable idea, but they are a bad charity.  Donate to the Autistic Self Advocacy Network, The Arc of the United States, or A.skate instead.  If you want to help children, you could also ask special education teachers in your town what they need.  If you want to help adults, consider helping an unemployed autistic find a job.

gotta-keep-your-head-up-love:

In October I will be walking for my second year in a row for the walk for Autism Speaks, and need a little help raising money. I hate asking for money from anyone, but this is such a good cause and something I am VERY passionate about. My team page is looking a little lonely right now because I haven’t really started collecting money just yet, but decided now is a good time. Last year was my first time ever walking in this walk and I was the team leader. I am the leader of my team once again (no pressure at all) and want to raise even more money than we did last year. Below I am going to put the link to my team page and would appreciate any little amount someone can give us. You can pay by credit card OR print off a donation form, fill it out, and send it in. Literally any amount helps! Thanks in advance! Also, if anyone has any questions at all feel free to message me. I would love to answer anything you have questions about!

http://www.walknowforautismspeaks.org/faf/donorReg/donorPledge.asp?ievent=1011310&lis=0&kntae1011310=0B42F8CE184B40D1A8CE84F883DE8887&supId=351453806

Below is my story of my connection to autism, and why I am very passionate about raising money for this great cause.

2 1/2 years ago I started babysitting a little boy with autism. When I first starting watching him I knew nearly nothing about autism, and although he has a very mild case, I soon started to notice differences between him and other children. He has little quarks that make him who he is. He’s one of the smartest, funniest, and loving children I have ever met in my entire life and he has changed my life completely. I have learned what patience really is and have gained a lot of it in the past 2 1/2 years. I have learned what it really means to love someone who is “different”, and that different isn’t bad at all. In fact, it is one of the most special and beautiful things in the world. I have also learned a lot about Autism in general. Soon after I started watching him I started to research things about autism. I read countless articles online, read a few books about it, and took note on things other people told me about it. I loved learning about it and found myself intrigued by just how difficult this “disease” is to understand.

This little boy is such an important part of my life, and I love watching him grow and change. Although it’s not always easy to be the babysitter of a child with autism, I literally wouldn’t change it for ANYTHING in the world. I love him with all my heart and can’t wait to see where his life takes him.

-Kelsey

You have it backwards.  Never be ashamed to bother people who can afford it about giving to a worthy cause.  Solicit guilt-free and incessantly.  The problem is not that.  It is Autism Speaks.  Here is what the people they claim to serve think of them:

http://goldenheartedrose.tumblr.com/anti-autismspeaks

http://www.dailykos.com/story/2007/05/19/336513/-An-Autistic-Speaks-About-Autism-Speaks

http://www.mediaite.com/tv/first-autistic-presidential-appointee-lambastes-joe-scarborough-and-autism-speaks

If you do not want to change him, you want nothing to do with this organization.  They want a world without him.  Give the money to a non-profit like ASAN, instead.

draggle:

I’ve never lived in an area that hosts an Autism Speaks walk before.  I lived in Philadelphia for a time, but that was before Autism Speaks existed.  Point being, I’m very worried.  I want to protest, I have a lovely team with which to do so, and I’m scared to pieces.  A$ supporters are going to be hypocritically angry at me for involving my children should I choose to do so and really I don’t know how how I can not, and they are going to try to make my children think I don’t love them, and things could get very very ugly.

Help. 

I respectfully disagree with the response.  You have every other day to be polite.  It is the pragmatic approach to talking individuals away from the organization.  That is not the goal of a protest.  You are there to present a counterpoint to their narrative to your community.  It helps to be conspicuous.  Be dignified, but be seen and heard.  Your town is the target audience, not Autism Speaks.  The only message for them is that they are unwelcome. 

It looks worse than it is.  Last year, I was alone.  I made a ‘cure closed-mindedness’ shirt.  My placard called for rational discourse.  It had contact information.  I was still trying to talk to them as an organization then.  I saw soccer moms bare their teeth.  It was unnerving, but no one hurt me.  This year, I returned with two others.  They were somewhat better behaved, though we were quickly rousted by police.  Know whether there is a place you can be seen and still stand on public property.  Know local laws on protests.  Know whether you are willing to get arrested in advance.  Pass out ASAN flyers.  Print them early.  I did them the night before.  The cartridge was low.  The coloring was awkward.

selfguided-autistic:

I want you to stop for a second and think.  Think about yourself exactly as you are.  Do you want to change who you are?  Are you happy being you?

Now, imagine yourself exactly as you are, except you seem to fall under a label.  Who knows what this label is?  It’s just some label.  You don’t mind the label.  It’s just there and it describes you so well, you happily embrace it.

Now think of something you can’t seem to help.  Let’s say it’s something like a poker-tell or maybe even something as simple as blinking.  You don’t notice it and, unless you’re conscious of it 24/7, you can’t control it all the time.  Now add on something you don’t like—maybe it’s really loud noises or light too bright to see.  It might be something simple that can just give you a headache every once in a while.  Because this isn’t “normal” for everyone else, it’s now considered a disorder.  Your label is now considered a mental disorder.

But that’s okay because you’re happy with who you are and, if you need help with something that makes every-day life difficult, it will be there because you have a recognized mental disorder.

There’s more here.  Let’s say your mental disorder makes you act in a particular way.  Maybe you’re a bit meaner than everybody else or you’re too trusting.  You know about this, you know how it can be a bad thing, and you’re willing to work on it.  It’s just another part of your disorder and despite it, you’re still happy with who you are.

This is you.  This is your life.  Just imagine that.  It’s not really so bad.

Now I want you to think about something else.  An organization recognizes your disorder and they don’t like that you can’t live your life just like everyone else.  They don’t like that you don’t follow what they consider to be “normal behavior”.  So, this organization starts trying to spread awareness of your disorder.  Everyone needs to know about how awful your life is because you can’t be normal.  They want to cure you and take away not just your little issues here and there, but every aspect of your disorder that, in the way it works, will even change aspects of your personality.  They want this cure so bad and want to pressure you to take it whether you really want to change or not.

But weren’t you happy the way you were?  Aren’t you proud of who you are?  You’ve accomplished so much in your life and don’t even mind working on these little things here and there because it all makes you who you are.  That organization just doesn’t seem to want to help you.  What’s worse:  it’s the only organization people know for your disorder.  They all follow it and think it’s doing this great and noble thing.  Don’t you just want to live your life as you are?

Now I want you to imagine something different.  Think about being really young.  Let’s say about 5 or 6.  Your parents have told you that you’re disordered in some way.  They tell you you have a horrible condition that can’t be cured.  They tell you you can’t help this or that.  Those little things you work on?  You don’t care, now.  You can’t help it—or at least, that’s what everyone says.  You don’t bother working on it because you truly believe it won’t make a difference.  You end up growing up without any confidence and without trying to accomplish anything.  Where does your life go from here?  What happened?  Your parents never knew that, if they had just done things differently, you could have grown up to be exactly as you are now.  You could have been proud of yourself and your accomplishments.  Instead, you were told you couldn’t do it so many times, you really believed you couldn’t.  Instead of growing up thinking your disorder is just another part of you, you think of it as some type of monster inside you.  It’s some cancer that eats at your brain and you have no choice but to live at the expense of others.  Terrible, right?  We should hope nothing like this ever happens.

But this does happen.  This is a real thing.  These two situations describe the lives of most autistics.  I’m one of the lucky ones in the first situation.  I’m happy with who I am and the worst I have is this organization that speaks for me but clearly doesn’t understand me at all.

Not everyone is like me.  Some live in the second situation.  They grow up with so little confidence that they end up dropping out of high school and never going to college because they don’t think they can do it; they don’t see the point.  Some are even pulled out of high school by their parents.  The most they can hope for is to have some advocate come to help them just to live through a day.  They hope that maybe the next day is when they can be cured of what they believe to be this horrible thing in their heads.

What about those that are between the two?  Those who have forced themselves to believe what they’re told is false.  These are the most inspiring people because they push themselves beyond what they’re told they can do.  Many push themselves beyond what they believe they can do.  They intentionally endure hardship after hardship because they can’t accept that they’ll never make something of themselves.

Just think about how these people live.  Imagine yourself in our situation.  Try to understand where we’re coming from and why some of the things you may say or do can really hurt us.  Just think about that, please.