Friday, February 6, 2015

Extending the Conversation

I was really excited and energized by the conversations sparked by my last post.  They mostly took place in other forums but that is fine with me.  I don’t care where the conversations happen so long as we are having them.  I did want to say thanks to Jodee and Suzanne for having a part of the conversation in the comments to the last post  so that folks who were not part of the forum, Facebook, and private message conversations could get a taste of it.  There were some things said (not by me) that I thought were too profound not to share.  So I’m reproducing some of the chatter below.  As always I have asked for permission to share and NOT included anything where permission was not given.  I also have honored folks wishes to be identified or not identified with their comments. 

Since these are snippits taken from various conversations I have done a few very small edits as needed to clarify context. These are in parentheses 

ME:  Suzanne sounded very judgmental to me -  I had a hard time being neutral in my reply but if I want others to hold off judgment for our kids I need to too right?

Victoria: LOVE your response to her thought and very valid points.  Something I think about often myself

Jenn:  I don’t know sounds like frustration to me.

RJ:  Yes, it was frustration mixed with some judgment I’m afraid.

Linda:  How brilliant (it would be) for our kids to learn to be so nonjudgmental of themselves that they could say that (meaning “Look I’m sorry. I have impaired impulse control abilities. Could we please handle the coffee payment differently while I am here? Is it possible to have a locked location for the money?“)

Mom of FASD child:  And that kind of workplace (where they could be open about their challenges) would be wonderful!

Savanna: Wouldn't it be great to be able to say Sorry I have impulse control disabilities, please take this back, it belongs to you. And the other person says Yeah? That’s cool and really interesting, Thanks for giving it back - how can I accommodate you? 

Me:  Right what if the default response was - Is there some way I can help?

Savanna: We all know that kind of honesty would get you rolled eyes and you would be considered insubordinate and seen as making excuses and a lie right there (about your disability)

Me: Yes because people really believe behavior is ALWAYS voluntary and willful.

Savanna: Agree, no one would be hiring us. Know what else they would say? You look fine to me, as they called the police or fired us.  They'd say we had intent and forethought and malice.  And we are very aware that is how that will go down. We are judged by standards that don't make sense for our disability.  If we can't be accepted for telling the truth then we have no choice but to lie, cover up, and live in shameful silence

Jenn:   About that commentor – I see a lot of frustration there more than anything.  I think this is a program that matters very much to her and having these “failures” really hurts. Like it possibly puts the program in jeopardy.  And it sounds like she has invested a lot in making it work – in doing something she believes in – giving folks with disability a chance.

Me: Thank you for that “perspective” I had not thought of and it makes me a lot more understanding.  I feel bad for not seeing it myself.

RJ:  When people feel like that they often come across as hard-ass...Sometimes, these people are not enough in touch with their own feelings of guilt or sorrow and this comes across as well.

Me: See this is why I love this community – you guys have compassion for everyone!

RJ: (about the post itself)  Wow... that "RJ" guy sure has a lot to say, huh?

Me:  He sure does – maybe I just need to have a regular piece called “RJ Says” 

RJ:  Maybe some different perspective (on what I originally said that inspired the post) though?  NTs value us being able to 'fit in" for their benefit to be sure, and No, in effect they are not honoring our true selves by expecting us to fit into a nice neat mold. And Yes - That is hugely insulting... but here's the thing, it's not personal, it's systemic... they don't call this a paradigm shift for nothing.  Society as whole, no matter how much we hope, is not there yet. So, this then comes down to a question of picking and choosing battles, in my own mind. If I can come across as fitting in so another person can understand me, that's fine.

This is a very complicated question in its own way, it is something I have had to learn, and it's been a good thing to know.  Some days, as you know I am up for the fight... but on those days I'm not... it's good to just fit in and hide in plain sight. I hope that brings my point across a little more clearly.

Me:  It sure does – thank you RJ.  See this is why having conversations / sharing perspectives is so important.

Savanna:  Here are my thoughts about the post… The desire to belong is inherent in all societies across the world. To find one's group of acceptance and to be able to identify with others is a need necessary for bonding which is necessary for survival.  

To be indistinguishable (not distinguishable?) would be to be a robot programmed for the sake and purpose of others motives. It’s also dangerous as one can be easily misled and manipulated.

One would also be mediocre and levels of creativity would be nonexistent. The world needs different brains.  Where would the world be without Winston Churchill, Marilyn Monroe, Ernest Hemingway. Carl Jung Einstein, to name a few. The different brain has access to talents and creative thought that others do not.  .A world like this would not be beneficial or thriving for anyone. 

When we cover up our disability or brain differences in order to pass for acceptable we:
-Kill our spirit, our intended purpose.
-we dishonor God when we dishonor or reject the self
-we end up feeling fake, phony and become in full blown identity crisis which usually makes us feel we are mentally insane.
-This leads to burying our feelings, and numbing our confusion with addictive substances used in order to "feel normal"
-It goes against our true nature and anything we do that blocks us from our consciousness and doesn't align us with our true nature is a lie. It’s devastatingly exhausting and hard and damaging to live a lie. "You are only as sick as your secrets." I read that once.

This mask or covering up can be felt intensely by the individual themselves and it leads to confusion of authenticity. It’s stressful and unhealthy, ultimately leading to more behaviors that are dangerous to our mind, body and soul and further separating us from ourselves and isolating us from normal society.

Me: You see Savanna – this right here is why I push you and X (who prefers not to be named right now), and RJ to post your own blogs and speak out. 

Savanna – I’m paralyzed with just starting.  I wonder why I am frozen. Maybe because it means so much to me. Perfectionism too (I have trouble) getting the thoughts out of my head they are too numerous and all over the place and sentences are really hard for me.  I need someone to write my thoughts into original sentences

Me:  No Savanna you really don’t.  What you just said  - that was perfect right there.

X:  I don’t speak in public or write either because it doesn’t feel safe.  You know that whole conversation about how people would roll their eyes while they called the cops?  That is real.  That is my life.   I have enough judgment in my life – why would I want to invite more? (by writing and inviting comment / discussion)

Me:  I get it I do. At least as much as someone who doesn't LIVE with it can.  But having the conversations is the only way I can see to change it.   

RJ:  I don't feel like a leader of any sort..... I dunno..... somebody has to do it

Me:  YES – A little at a time I am going to drag you all into it!  LOL

RJ: I love the challenge  I put myself here, and while I may feel a little undeserving...
I AM going to keep going... too many people I care about are suffering 

Yes, yes they are RJ.  Thank you - Thank ALL of you for allowing me to share your thoughts and words.  Let's keep the conversation going.  I want more of us talking about this.  I want all of us - all of everyone talking about it.  


  1. This is beautiful! Don't hide who you are!!

  2. I didn't intended to come off as judgmental and really am trying -- a diverse, inclusive workplace is really important to me (and the local government I work for) -- and am also frustrated with the debacle that was several interns who had FASDs (which is so NOT the fault of the interns themselves). We really, really try to help folks succeed. There is support and SO many do!

    And some of my frustration is indeed due to not getting why those specific interns did not succeed -- particularly as lots of interns who ALSO have issues similar to those with FASDs (impulse control, memory issues, mild intellectual disability, present at the level of an 11-15ish yo, coordination issues and/or some combination thereof) who DO succeed. And, well, I guess maybe my division isn't a good fit for folks with FASDs... but it seems so very wrong to write off an ENTIRE group of people as a 'bad fit' based on a disability.

    And, clearly, it didn’t come across well in my previous comments – but in terms of ‘fitting in’, I did not expect my interns to be ‘indistinguishable’, nor expect them to squelch their ‘creativity’. My expectations for them (and, honestly, the rest of my staff) were to 1) show up on time, 2) ask for help when needed, 3) not to steal/break stuff/lie about having done so and 4) abide by pretty standard workplace policies, e.g. work computers are not for porn.


    To Savanna, specifically:

    There seems to be a GIANT chasm between the extent to which you expect your FASD to be catered to (“it’s cool you stole my stuff, thoughtful of you to return it, what else can I do accommodate your needs?”) and what is within the realm of the reasonable (“sure, we’ll put a lock on the coffee payment jar and bolt it to the table”).

    Do you truly believe that pesky societal requirements to, say, not steal, not kill, not have sex with minors are what hold you back from being your true, creative, authentic self? That your "need" to do whatever the hell the you want trumps everything else? Do you truly believe your full potential has been thwarted as a result??

    Because your justification of your "needs" is scary-bordering-on-sociopathic. You've also made a terrific case for never, ever hiring a person with FASD ever again.

    And, last but by no means least -- you are looking at the "brain differences of the Hemingways, Marilyn Monroes backwards. They very likely succeeded in SPITE (not because) of their brain differences -- think of how much MORE they could've accomplished had they not struggled to get out of bed due to depression, lost years to addiction/hangovers/bad relationships or died way too young.

    1. Suzanne - I almost decided to hit delete on your comment. I've struggles and wrestled with it but I am not going to and here is why. I am glad RJ and Jenn called me out on judging your motives and I am glad that your comment confirms their intuition that this is a touchy subject for you because you do care so much about making an inclusion program work.
      Just as I misread you I think you misread Savanna. She doesn't expect to be catered to or allowed to behave in any way at all and have everyone just accept it. Nor did she say that having to forgo any specific behavior would stifle creativity. She said - if you spend your whole life trying to cover up a disability - there is no chance for you to grow into the person you could be. I would say you both have valid points about Hemingway and Monroe. IF they had appropriate support and accommodation of their brain based disability - depression - then perhaps they would not have felt the need to self medicate with alcohol or drugs. Perhaps then they could have shared more of their unique talents with us for longer.

      I think a lot of misunderstanding (not just this one) happens when we use a particular word among ourselves in a way that is different than it is commonly used. I think when Savanna - or I - or Linda or RJ say "accommodate" you are hearing / understanding what we would normally use the word "enableing" for. And I think that is perhaps that is the more common understanding / usage of accommodation - bend over backwards / go to outrageous lengths to cater to a persons wants.

      To try and clear that up - accomodations / accomodating is NOT allowing someone to do what ever the heck they want regardless of others wants or desires. And really it never should be - it is counterproductive for both the individual AND what we all would like to see - real understanding and meaningful inclusion. (When I say we all - I think that includes you too - you would not work so hard or defend so passionately a program to employ those with disabilities if you did not want them to have meaningful inclusion and belonging!!)

      What prompted my thoughts of deleting your comment was how you extrapolated Savanna commenting on a theoretical situation I had posed to her rejecting "pesky societal requirements to, say, ... not kill, not have sex with minors" None of which she remotely mentions - and addressing her as "scary-bordering-on-sociopathic' Please refrain from this kind of personal attack. But, also please, please, continue to comment. I speak out all the time about how we need our adult FASD community to speak their perspectives more often but in order to move forward it does have to be a multi perspective conversation. We will never get to real understanding or meaningful inclusion instead of just political correct speech with no real change without continuing to listen to the voice of concern. We need to hear about poor / failed experiences. Talking about them is the way we will learn how to make inclusion a success. I am completely sincere in my desire for you to keep pushing us to be clear.

  3. Catered t? Hmm. And you aren't being judgmental? Yeah. Is it catering to provide a child who isn't mobile with a wheelchair? How about a blind person? No cane, Braille or seeing eye dog for you! That would be catering! You must learn to see! You seem to be suggesting that making accommodations for a brain injury is different. Why? Please tell me, I really want to know.

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  4. I've missed out on some of the context but it makes me think about the future for our trans FASD daughter, now 14, and future employment possibilities. Apart from the Camphill Community (Steiner based) for people with learning disabilities it is hard to see where someone with FASD, so capable in many ways, can fit into mainstream society without breaking the rules and getting into trouble.

    1. Fiona- That is part of why I write this blog - because I face the same concerns about where my son will fit when he is an adult. Because FASD is a true spectrum disorder I don't think there will ever be one answer but I look at how excluded persons with physical disabilities were even just 50 years ago and how now my son has an education advocate who is blind / vision impaired and how one of the tellers at our bank is deaf / hearing impaired and I watch my 19 year old mobility impaired cousin take on college and plan for a career in teaching and I think - with work - with active advocacy - why could we not find room in society - with reasonable accommodation - for our loved ones too. Looking at the rates of autism and FASD inclusion for the neurodiverse is a problem society is going to NEED to solve.