Sometimes it feels like Nice is a Dirty Word.

Being polite is this really tricky thing for me.

On one hand, I know that I struggle with being polite, even when I mean to be. There’s lots of little things that even after ages of studying, I miss. And those little things end up having big consequences as to how I’m taken. I miss a signal to stop, I’m “over bearing;” I miss that I’m supposed to say something/contribute, and I’m “Unfriendly.”

As a kid, I would try (when brave enough) to mimic the “playful” teasing I observed between my peers, and miss that it had slipped over that vague line of playful. I was shocked and hurt to hear my mother mention my on occasion “bullying” kids who were trying to be my friends. But the rest of the time, I was too “shy,” too “drawn into my own world.” It seemed as though there was no way to reach a happy medium in between, the one where other kids would presumably like me.

I’ve gotten, I think, a little closer to a manageable compromise. I’ve decided against listening constantly and desperately to the coaching and pleading, and generally try to be nice, opting to withdraw rather than risk it.

There are exceptions, of course. I tend to have a highly developed sense of right and wrong, and sometimes there’s just a little too much *wrong* in the world. Then I seem to slip up.

Let me give you an example. Recently, I was visiting my Aunt in NYC. She married a guy who has done pretty well in contracting, and so yes, there’s a good bit of a class difference. In any case, we were having  conversation with my sister and step aunt, nd she started going on and on about how great “The Secret” was. She was recommending it to my sister.  After a while, I couldn’t handle it any more.

I stated that actually, a lot of people who are facing various oppression (Like classism, racism, or ableism around Mental Health Issues) find the culture around subscribing to The Secret to be very hurtful. Too often, people whose issues face against more than the white middle class abled “mainstream” are said to have not worked hard enough at it for the “Laws of Attraction” to have worked. The Secret in too many circles is used to both deny privilege and to blame oppressed peoples for their continued struggles.

That’s not to say that there aren’t people for whom it works and is mega helpful. But to hear it go un-critiqued when recommended to my sister- who like me comes from a different economic class and who has her own disabilities- was not something I could handle. I Had to say something.

I later found out that she thought I hated her, in part from this and in part because of not interacting otherwise as she expected. Which isn’t true- I love my aunt very much, I just get frustrated by what I see as obvious class differences and how they effect how we see the world.

In any case, I end up feeling as though I’m too mean.

Online, it’s a little bit different. Somehow, I feel as though I’m a little too nice compared to some of my friends and fellow advocates. Maybe it’s who I spend time with. I often feel like there’s so much of my conditioning from childhood of trying to fit in, to dodge some of the less than wonderful experiences of “treatment” that makes me try to be nice all the time. To educate instead of protecting my boundaries.

Most of the people I know in Social Justice circles know that it’s not an oppressed person’s duty or reason for being to educate those who hold privilege over them. It isn’t, for example, an Autistic’s (or other person with disabilities’) job to live as a “self narrating zoo exhibit” as Jim Sinclair would say. It is the oppressor’s duty to get educated, not the oppressed’s to educate.

But I cannot bring myself to not educate. Trying to establish boundaries like some of my friends have is something that leaves me feeling torn.  And I know that it is okay for me to educate people, but sometimes I worry it makes me seem too *nice* when compared to some of my friends. And I don’t mean nice in a kind person way. I mean nice in a too compliant way.

Nice in a way that would make people I love and respect look down on me as feeding into my own oppression. Or, perhaps, in a way that belies how deeply ableism has infiltrated my thinking. There’s a lot of things I keep stumbling across when I go to examine my thoughts that remind me how much of life as someone who- in my case- is an Autistic and has MH issues ends up being about compliance in order to survive.

How much of my desire to be kind is based on my beliefs, and how much is based on the feelings that I need to be “nice” in order to be worthy of surviving, of getting the supports I need?

I’m not going to stop being kind, or educating people.  I will admit I can get s little sharp- for me- on my tumblr, but that’s tumblr and a lot of it is reblogging other, sharper people’s comments. But I’m not going to deny that drawing the line between being kind and being compliant is difficult.

But then again, undoing the things we have internalized is never easy.

_____

Sorry if this isn’t at my usual standards. I just needed, for myself, to write this.

This has been republished at Shift Journal.

AWN and Pepsi Refresh

I have been reluctant to post about this here because I like to maintain myself as an independent advocate on top of my work with various organizations. But after weighing my options, I’ve decided that this post does need to be made.

Autism Women’s Network (which I am the Director of Advocacy for) is currently in the running for a $50k grant through the Pepsi Refresh project. The Pepsi Refresh project gives out monthly grants based on community support to organizations and projects. (Official Page; Story on it.) You might have seen a version of this commercial on TV, featuring  Black Eyed Peas’ “One Tribe” Buy "One Tribe" on iTunesBuy "One Tribe" from Amazon :

AWN is pursuing this for a couple of reasons.

1) Project FAIM. FAIM stands for Female Autistic Insight Mentoring. The idea is to provide trainings and workshops in communities across America that focus on the issues- and possible supports- faced by women and girls with Autism Spectrum Disorders.

We plan on bringing in adult autistic women to share insight on these issues, as well as providing valuable role models for autistic women in attendance. But the core of the program isn’t bringing in names or faces- you can get that at your average conference, some at which the presenters are the only autistics in attendance. The idea is instead to use some of the stories to get an idea about some of the issues facing many autistic women, and to make these issues real to participants.

The real “meat” of the project is to bring the ideas, skills, and the framework for finding resources on a wide range of issues into our communities. We expect to reach a wide range of people, from autistics themselves to allies such as friends and system peers and service providers. By changing how our allies approach the issues, it is our hope that local communities can be more effectively supportive. Too often, a medical model is used when looking at supports, and rarely is a medical model effective for most of the issues people face. When we change the paradigm from a medical to an individualistic approach, we can see more success in all areas of life.

Some of the tentative topics we will be covering include peer supports, Entering adult life- and what that means for different people, Learning how to successfully communicate and negotiate some social expectations, and identifying vulnerabilities and some safe guards we can put in place to protect us. Other topics and issues are welcome to be included.

2) Establish AWN’s Non-Profit Status. Establishing federally recognized non-profit status is no easy matter. There are a LOT of steps involved, and lots of legal work involved in the establishment of any organization.

The basics are to: a) achieve incorporation in a state. Each state has their own standards of incorporation; since we will be establishing out of Nebraska, we will be following NE standards. b) Remain incorporated for a minimum of 3 years. This is a standard enforced by the IRS; any and all tax documents from this period are thoroughly reviewed by the IRS during the application process. c) The filing of extensive IRS forms. You can get an idea of these forms by checking out the IRS’s requirements, or their Step-by-Step guide.

This takes a lot of hard work, and can be difficult for someone without a legal background to accomplish. In addition to user fees, AWN would also need to enlist the help of someone with that sort of background in order to reach 501c3 status.

3) Continue Our Current Projects. Since we opened the AWN website in January, we’ve seen a very positive response. Right now, we have a forum that provides a place for peer support and information sharing, Articles on topics of interest to Autistic females and our allies, and an events calendar to let people know about meet-ups, workshops, and other events. We hope to implement further features including private blogs with user defined privacy features in order to keep our members safe and still able to communicate their situations and needs.

In addition to our website, we also have a radio show hosted on Blog Talk Radio, a facebook page, and youtube and twitter accounts. Some of our chapters have also hosted events, such as the Autism Night Out in the Philadelphia area earlier this year.

The Pepsi Refresh Project allows you to vote once per day for any one project, with a total of 10 votes a day to spread out throughout the various projects. There are 4 different sections on the site: $5k, $25k, $50k, and $250k. AWN is in the $50k section- so any votes in the other 3 sections won’t count against us. For the $250k section, only two projects will win each month, but the other three only require you reach the top 10 in the section to win.

Here are some projects in the other sections that might be of interest:

In closing, I ask that you please vote for AWN once a day if you feel so moved, and to check out some of the other promising projects in the running this month.

When Your Own Problems Take Over

I haven’t been updating this lately. Last time I did, it was to share charities in the wake of the Haiti Earthquake. There are some simple and not so simple reasons for this, so I shall summarize.

I had a back slide in my own issues. I’m a fairly proud individual, so admitting that is a big deal for me. Lots of personal issues emerged at once, and with little to no recovery time in between. The stress had me backsliding in a lot of areas. But that backsliding has allowed me to admit just how much help I do need.

Some of you will not be surprised to know that my executive functioning and daily living skills are not the best. This isn’t something I am entirely comfortable with- even though I know that they re linked to my disability, admitting that they are a problem  makes my pride twinge. I was, like many of us,  brought up in ableist environment. Asking for help was something that I have feared doing. And learning to do so- and to begin shedding my own ableism- takes a lot of work.

In April, I finally admitted to what people had been telling me for a long time. I wasn’t ready to live on my own. Since then, I have been preparing to move in with a family friend, who will be able to provide the type of supported housing that I need.

Many supported housing programs will house you with other individuals with certain types of disabilities, depending on your service system. I am familiar with my county’s system, and I was scared that I would be placed with someone with conflicting issues. In addition, they  tend more towards a group approach. It is hard to tell professionals that that is not what you need.

So I am moving in with Janet M. and her family. Janet used to take in hard to place foster kids- also known as those with special needs. She adopted her son Steven- my age, and non-verbal- when he was 10. He recently moved into a group home that supposedly is helping him. She has the background to know what she is dealing with. She also is renting a room to an elderly man with Schizophrenia, and he has shown improvement since moving in.

Here’s the positives involved with this new situation:

Janet is strict about keeping the house clean. There will be a chore chart. I will most likely be given the bath room cleaning and laundry (since that is what I asked for). The Chore chart is a weekly schedule, and one that she is strict about.

I will be required to wake up at a reasonable time, and to not spend the entire day in my room. She doesn’t mind if I am online, but I need to be somewhere where there is a chance for human interaction. I will also be expected to go into Franklin at least once a week. Eventually I hope to get up to more than once a week, but that is something I will have to work on- being scared of going out in public is an issue for me, particularly if I don’t have a distinct destination.

She will make sure I make it to all my appointments, learn to schedule things properly, and make sure she pushes me when I need it. Her tendency towards schedules and charts should help me- I function better on a schedule, even if I have a hard time establishing them on my own. We will also be working on independent living skills beyond that- learning how to drive, becoming more capable at using the phone, budgeting, etc.

I will still be paying for my own food and personal supplies. She is providing housing, utilities included, and guidance.  I will be asked to pay rent.

The whole thing is scary, but I have hit the point where on my own I am endangering my health and wellness. I have to admit to the need for change, even though it is terrifying. This isn’t the first time I’ve admitted I can’t live on my own- I had someone move in with me in Erie in part because of that- but it is harder this time.

News and Numbers

First, some Personal News: I’m the new Assistant Director for AWA-Pa Alongside the wonderful AspieTeach, our Director for PA. Please check out the site and let me or her know If you have news or resources for women on spectrum in PA!

Also in the Positive, The Rethinking Autism “Autistics Speak” video (My post is here) Is getting a lot of response. My biological father and I talked today, And he’s been showing it to people at work, friends, and Even his Therapist. They even used it as a way to prompt discussion is session.

In a broader sense, Rethinking Autism has been getting some community Media Exposire. AWA Radio had Dana on, and she’s scheduled for Mad as A Hatter (air date might vary, V’s been ill). If you have a media outlit, please consider asking Dana on! I’ve had several people tell me they’d love to see Rethinking Autism’s latest video have a broader Audience, and I know Dana would love that as well! After all, our message is meant for everyone, not just the Autistic community.

And now, Numbers games:

a couple of articles are out about statistics in the Autism Community. One news Study claims we are at 1 in 91 US kids on the spectrum. This, of course, is including the entire spectrum. What is interesting about these new studies is that previously, we had claimed to have a lower prevalence (1 in 150) than other countries (UK claims 1 in 100).

Another Study Claims the numbers are at 1 in 110 and which has been covered by Left Brain/Right Brain. It should be noted that this was based on parent reports of behavior received via Phone surveys- not the most scientific way of collecting data. It’s imprecise, but it certainly gives us a lot of leads for future studies that will hopefully involve more reliable data collection. Also, some of the parents claimed that their children are no longer on spectrum, which raises further questions. I reccomend the above linked article for a good analysis of this study. (USA Today also covered this story.)

Speaking of all these numbers, left Brain/Right Brain have a good question- Do We Need an Epidemic for People to Take Autism Seriously? This post is a well written and detailed look at the numbers and epidemic centered tactics used by various groups, and comes away with an answer- No, and Epidemic language might even defeat the purpose. Definitely recommend this one.

Adam

Back in early July (the 6th, to be exact) I went to a showing of Adam in DC at the MPAA building. There was a number of people in attendance, and most of the ones that I knew were involved in the Autism/Advocacy community.

I liked the movie itself a good bit. Adam is about a young man and a young woman who fall in love- the twist here that the young man, the titular Adam, has Asperger’s Syndrome. For much of the film we follow Beth (the young woman) as she meets and then starts to fall for Adam while dealing with disapproval from co-workers, friends, and parents. It was cute for some parts, and though it is billed as a Romantic Comedy I found it to be more of a Dramatic Romance. (This sentiment has been expressed by others, such as Jake Crosby*.) There was a lot covered here, and a lot of the comedy was of a more NT nature.

At the screening itself we were asked what seemed to be standing out to us about the film. The most common sentiment was about how Adam is the only on-spectrum person we see in the movie; our worries about Aspergers becoming the new “Magic Negro” in film (ironic, considering the character’s only friend seems to be a man who helps him with certain things and whose conversations were similar enough to the trope); and that the character of Adam simply h ad too many traits for one person.

As more and more people got in to see the movie, E-mail lists exploded. (Not literally of course!) Each person on spectrum that watched had problems with different aspects of Adam’s character- often the same aspects that others most strongly identified with. As a community, we Identified our number one issue- that Adam was too obviously a composite character.

(Some blog** reviews: Sister Sunshine’s, Abledbody, Aspie perspective’s not-review, Autisticcat’s Not-review, Aspieteacher’s review, Note: though as you can see I’m not posting spoilers for the movie, some of these reviews do.)

In the end, though, it’s a movie I- and others- want to have seen. I know of at least two Canadian Autistic friends on Twitter who want to get a showing locally at some point and who I’ve been actively communicating with. Right now Adam is on a limited release, and is releasing to a gradually wider audience over the next month. (If you’d like to know when the release nearest you is scheduled, Foxsearchlight- the distributor- has a list of anticipated release dates.)

Currently, the “wide” release date shows mostly major cities, but not everyone lives in major cities. The nearest anticipated release to my hometown is in Pittsburgh- around a 2 hour drive each way. And the thing is that the people I want most to see this are unlikely to travel that far for it. These are the Parents who crave something positive about the adult their child might grow into someday and the employers who don’t know what is up with that one employee. The girlfriend who doesn’t know what she’s doing and the young man who doesn’t identify himself yet. The young adult who doesn’t have the support structure he or she needs to enable a ride so far- and doesn’t know how to develop it.

Those are all the least likely to travel two hours to see a movie for various reason, be they the time away from the home or office, not seeing enough relevance for that sort of trip, or not being able to arrange the transportation. But they are the ones that will benefit the most from watching this movie, not the ones who have been hyping it and have the means to travel that far.

So I, and some others, are looking for ways to push for a local showing, even if it’s only a one-time showing. It’s why we are leaving comments about our interest in a wider release on the distributor’s page. It’s why we are reaching out to the local groups for autistic and for parents and why we are nervously approaching the manager’s desk at the theatres. It’s why we are tweeting about it, why we are talking about it on facebook- or making snide remarks about the NT-biased quiz- and myspace, why we are hyping it.

Because there IS a segment of society that needs the exposure that this movie gives, but won’t get it unless we do something.

Consider this my asking you to join us in getting this to local theatres. I’ll be asking the Movies at Meadville if they’d consider having Adam as a weekend showing this fall, and have been asking others to do the same in their locally run theatres. I’ll be talking to the support groups in Venango and Crawford counties about having them express interest in a showing, in perhaps going in as groups. Maybe I’ll get up the courage to ask the meadville Unitarian church about it.

Remember, the more interest that is drummed up, the wider the release gets, and the more people who see it and start to ask questions about their perspective of who we are.

* Please note, just because I’m linking to an article doesn’t mean I agree with the individual in all or any aspects other than explicitly mentioned, and I might even have some major philiosophical issues with them outside of the context in which they are mentioned. I feel, though, that my moral obligation to share information outweighs those differences in this specific context.
** Got a review? Let me know! I’m always looking for more info for people. Also, the not reviews are reactions to the publicity that are relevant to the discussion but by people who are anticipating seeing the movie.

And here’s a Trailer for your dose of video clip: