HOUSEKEEPING (Big news and a SURVEY!!!!)

Dear Persons,

I hope this post finds you well.

 

And it may not have found you as it usually would, as the app that sent out my posts to subscribers stopped working with Blogger. If you’re here and would like to be notified of future posts, try the new subscribe button at upper right. I don’t know how these functions work, but I didn’t understand the old one either. I’m just hoping it will work for you! With almost 300K readers, FSM has been a success beyond my wildest dreams, at least in the connection department (still waiting for the enormous financial windfall so typical of personal blogs about family and differences…). 

 

Lots of other news in Full Spectrum Land. I do hope to have some new substantive posts in the coming months but for now:

 

1.     My first book about neurodiversity is coming out on 2/21/2022. Written in collaboration with Jenna Gensic of the Learn From Autistics blog, The #ActuallyAutistic Guide to Advocacy: Step-by-step advice on how to ally and speak up with Autistic individuals and the autism community integrates more than a hundred interviews with Autistic people to offer guidance to anyone looking to thoughtfully, respectfully, effectively self-advocate, or advocate/ally with Autistic people. 

 

Both Temple Grandin and John Elder Robison have already endorsed the book!!!! I’m over the moon. I’ll get a link up here when it’s available for advance purchase. You’ll also be able to contact the publishers for review copies. WOOT.

 

 

2.     We’ve begun work in earnest on BOOK TWO!!!! This book will cover many of the same advocacy themes but from a teen and young adult perspective, with a special focus on BIPOC, LGBTQIA+, and other intersectional perspectives. 

 

To that end, we are looking for Autistic teens and young adults to fill out our survey, so that we can include the broadest range of voices possible. By the way, we consider self-diagnosis completely valid. If you or anyone you know fits the demographic (that is, ANY Autistic teen or young adult), please click ****here****. 

Feel free to forward this survey link to anyone who might be interested. Please also note that the survey is long. Take your time, use the save/cut-and-paste options if helpful, and absolutely feel free to skip questions that don’t interest or relate to you. The ONLY required question is contact info.

 

Our survey was designed and is being disseminated with the brilliant and powerful young folks at Detester Magazine. 

 

Here are some links to find out more about it:

 

·      Instagram survey post 

 

·      Instagram podcast post 

 

·      Facebook survey post

 

·      Facebook podcast post 

 

Thanks and love,

Full Spectrum Mama

NOT A DISEASE

Dear Persons,

As a family of vegetarians, we’re always on the lookout for veg-friendly places to eat when we go on the road. We recently ended up at a gluten-free establishment in the Midwest. Pretty good food! But I won’t mention the name because I did a bit of stealth activism there and I don’t want to make any assumptions about the owner or staff or clientele… 

You could get your own water and bus your dishes etc. toward the back of the restaurant, as well as use the bathroom. And there was also a help-yourself bookshelf full of stuff to read back there. I am always down for a good read, so I took a look. 

Well, the books consisted almost entirely of books about autism. But not just any books. 

“Cure Autism With This,”  “Cure Autism With That,” “Get Rid of Autism With The ___ Diet”—you get the idea.   

I felt ambushed—and horrified. I’ve spent all my parenting years trying to get my kids to love themselves as they are. Sure, I’ve read my share of books about the various nuances of our lives, such as adoption, autism, racism, neurodiversity, learning differences, behavioral differences, trauma, etc. 

And hey, yay healing! We all have stuff to heal. 

Heal away! If, in fact, it’s something that needs to be and can be healed. 

But I’ve always operated in a context of acceptance and diverse perspectives. This felt like a full-on, unilateral assault on being autistic—however well-meaning. 

I quietly went back to my table, took out my mini travel notebook and began to write. Then I went back to those shelves and placed a note in each book: “Autism is a neurology not a disease.” 

And on the long drive home from our trip, I thought about the ways our culture pathologizes so many things that might better be treated as normal and healthy aspects of the human condition. 

Being shy? A serious condition. Same-sex love and desire: a psychological disease? Until shockingly recently, the majority of people, including some scientists and doctors, thought so. Cellulite: abnormal but “curable” (hah!).  Are you little bit weird? That’s weird. Maybe kind of…spectrum-y? Better treat it. 

We even treat getting older like a disease. In fact, I’m embarrassed to admit (even to myself) how much of my internal dialog consists of self-criticism over my age spots or crepey skin. How ashamed I feel on a very gut level about aging, despite being a feminist and never, ever ageist with others. 

Um…HUH? What’s the alternative? 

When will we wake up to the full range of beauty?

Thanks and love,

Full Spectrum Mama

Welcome to Voices of Special Needs Blog Hop -- a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Mommy Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo -- from Sensory Processing Disorder to ADHD, from Autism to Dyslexia! Want to join in on next month's Voices of Special Needs Hop? Click here!

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A WINTER PRAYER

Hate cannot drive out hate, only love can do that. 

Martin Luther King Jr. (from Strength to Love)

Dear Persons,

It’s easy to grow bitter. Sure, if you have a child with special needs, losing faith in this world is often tempting; but in this divisive political climate being human is an indicator for general angst. So yeah, we need help. Here is my Winter Prayer to the Universe, the One Song we all share: 

Dear Universe,

As the days grow colder and shorter,  may the extra darkness offer rich soil for growth. May the falling temperatures allow us to, um, appreciate the warmth betterer? 

May there be less wintry mix precipitation and black ice and more coziness and sparkle. 

How about no black ice.

May those entrusted with our children (Betsy DeVos, I'm talking to you!!!! [Oops, did I write that out loud?]) actually have their best interests at heart. 

Likewise, may those entrusted with our only home, Mother Earth, do the same, dear Universe. 

May we - in the waking hours we can muster this season - find the strength, energy, and time to be there for each other, and to find the resources we need to advocate for and nurture our differently-abled children, selves, family, and loved ones. 

May we learn to ask for help when we need it. 

Before we judge, may we consider the possibility of unseen struggles, mental health issues, “invisible disabilities”…

May we learn not to take things personally, even as we refuse to countenance injustice. 

Can those “All Lives Matter” people make a Black friend, please? 

Might we send a contingent of willing trans persons as ambassadors of queerhumanness to all places showing evidence of small-mindedness around gender? 

Let’s get some drag queens in there, too. They could bring cupcakes from Scott Cakes! And warm coats!

Please sprinkle in some other people with differences that differ from the “norm” in these places (in whatever ways: religion, ethnicity, citizenship status, ability, sexual orientation…), bearing, perhaps, free kids’ books about diversity and inclusion, in order for peoples’ definitions of people to expand. 

Actually, can we have all of these individuals bring their families — whether of origin and/or orientation — as part of their delegations? Can we? And then partner each family with a local family, have them plan and cook a meal together,  and give them a discussion agenda that includes favorite funny movies, animal heroism stories, and, I dunno, high and low life moments? 

Thanks! Because it seems to me that when people see people as PEOPLE it becomes nigh impossible to hate. 

And, just a thought, can we get some people on the spectrum on this whole tax reform thing? Because some of us are pretty good with numbers and our “literal,” “black and white thinking” around, you know, the math aspect might be a strength for the future of U.S. civilization in this particular context. Do you want to know whether a particular change to the tax code will benefit the economically disadvantaged or the middle class? We can actually tell you. 

Come to think of it, may there be progress, however incremental, in people being fairly paid.

Also? The men in charge right now…could they be immersed in a crash course in menstruation, harassment, gender discrimination, childbirth, and motherhood? Also also, working and single motherhood? Thanks. REALLY - thanks. 

Bonus: In fighting injustice and working to empower others, may we never degrade or forget the humanity of all concerned. (That’s a hard one sometimes - healthy anger fuels change while destructive, vengeful rage destroys lives.)

See, because either we are engaging or we are withering. Bitter. And you know what? Bitter people are often cruel. I know this all too well too.

May we hold our loved ones close, knowing that life can be all too fleeting. May we make every day count, even the *&^$ ones. 

Dear Universe, we all cry the same salt tears. May we also have the mental and emotional space to see the beauty, joy, courage, and kindness that coexist with the hard stuff. 

May we retain our hope and faith. May we regain our hope and faith. 

May we find strength through love. 

Love,

Full Spectrum Mama

P.S. What are your prayers, dear reader? Feel free to share them in the comments below, or email me at jineffable@gmail.com.

Welcome to Voices of Special Needs Blog Hop -- a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo -- from Sensory Processing Disorder to ADHD, from Autism to Dyslexia! Want to join in on next month's Voices of Special Needs Hop? Click here!

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ARGHERS AND ACTIVISTS

Hello, my name is Full Spectrum Mama and I’m an Argher and an Activist.

I’ve been politicized by having “different” children, but I suppose I was pre-politicized by being “different” myself. In the family I grew up in…well, let’s not get into that. Let’s just say it took me a long time to realize that speaking up when something is wrong is not “having a victim mentality!” It’s about seeking justice. Speaking up does not make you the bad guy. It makes you an Argher and an Activist.

The “Argher” label arose when my Meeting Friend and I were commiserating over an injustice and I thanked her for the pleasure of feeling like we always understand each other and she replied, “I can argh with the best of them.”

Well, I appreciate that a great deal!

People with obvious differences from the “norm” and/or the majority  – those with visible physical differences, differences of demeanor, skin color differences, some trans people… – don’t have a choice about being noticed. Sometimes that “noticing” takes the form of bias, discrimination, bullying…

People who are activists for animal rights or political justice or against other injustices may be activists for causes that are urgent, but they have a choice.

In any case, there IS injustice in the world.

Sometimes what we need when life deals injustice is someone to say “Argh!” with us. And that can be enough. Actually, we almost always need a fellow Argher -- at the very least to understand and empathize.

There are several sorts of Arghers:

            The CO-Argher, who shares your situation;

            The WITH-Argher, who just completely Gets your situation;

            The GENERAL-Argher, who is compassionate in every way…

…We will not deign to discuss the ANTI-Arghing-Argher, who wants the other Arghers to can it, pronto.

Our fellow Arghers make life bearable when something feels very wrong. But, often, we need more. The “Activist” label arose for me when stupid stuff happened & I chose to call people & institutions out on their discriminatory behavior. Activists seek to be catalysts for change, because the status quo is often unacceptable.

Arghing is private, but Activism is public and often elicits resentment. People generally want Activists to keep quiet and go away so that they don’t have to be inconvenienced by accommodating the equality of ALL.

So—rry.

Activists may be sorted into similar categories:

The CO-Activist, who shares your cause (just about everyone I know who has a “different” child has been shunted into Arghing and/or Activism. As a parent, one basically has no choice);

            The WITH-Activist, who just completely Gets your cause and supports it;

            The GENERAL-Activist, who is justice-oriented in every way;

The ANTI-Activist, who finds Activists burdensome and pesky.

Liminal people – minorities, people with differences, etc. – often have way more encounters with neurotypical, gender, economic, racial, normative or other privilege. If a given liminal individual (or their parent or partner or other loved one) is strong/brave/privileged/foolhardy enough, he or she may choose to speak up about injustice.

For many reasons, however, we don’t always say something, whether through public Activism or private Arghing. Some of us are non-verbal, some of us are shy, some of us are scared, some of us are tired, some of us are cynical, some are resigned…

We DO always feel it, though; of that you may be sure.

What happens, then, is that those of us who by virtue of our own and/or our children’s and/or our loved one’s differences see more injustice and choose to address it sometimes find ourselves in these positions:

“rebellious” people of color,

“uppity” women,

“whiney” people in poverty,

“annoying” disabled people,

“shrill” queers…

A.k.a., Arghers and, perhaps, Activists!

The funny thing, vis-à-vis the people who resent Activism, is that the kinds of Arghing and Activising that I am talking about are long-term beneficial to ALL. Sure, it might take some stretching on the parts of certain individuals and institutions. The “privileges” of inequality from which some benefit (and others suffer) may be hard to relinquish, but I cannot hope but believe the rewards would be more than commensurate. Truly, what do we ultimately have to lose by being more inclusive as individuals and communities??

Ideally, as painful as they are, these experiences of talking about and struggling with and negotiating over and even experiencing injustice make us more fully human, more empathetic to others.  Once we have experienced injustice, we don’t want ANYONE to suffer.

Take, for example, Hedy Epstein, the 90-year-oldholocaust survivor arrested for protesting against institutionalized racism and violence in Ferguson, Missouri last month. My instant take on hearing about her was: OF COURSE: She has experienced and recognizes injustice…She cannot stay silent, having once escaped being permanently silenced.

She, too, is an Argher and an Activist.

We can be proud to share her proclivities!

Love,

Full Spectrum Mama, A. & A.