Showing posts with label allistic. Show all posts
Showing posts with label allistic. Show all posts

Tuesday, July 10, 2018

99 Problems





I can’t be the only person who sometimes feels the world is a minefield for anyone who is not a white, middle class or above, straight, neurotypical, cisgender, male, typically abled person with a resolved and “good” citizenship status.

Or maybe I am just an oversensitive rabble rouser. 


In any case, when I got this "special" handout after a medical appointment for my son:



...I felt aaaaaaalllllll the feelings. 

It’s hard to even respond effectively or “unemotionally” to these things that blindside you when you are just trying to get your kid’s toe looked at. (Or read a book, or go to a grocery store…I mean, you know what I mean: Unfortunately, discrimination and ignorance can pop up just about anywhere.) 

Here’s what I sent to the whole office, including individual doctors:


Dear [Medical Professional/Office],

Please see the attached partial shot of [G]’s handout (from a visit for an infected toe) from last week. 

While there is much that I could say about this — whether from a moral, legal, ethical, neurological, medical, and/or personal perspective — I will limit myself to this:
Imagine how you would feel as a human being (never mind as a CHILD) to see your way of being (the way you were born) casually maligned as a “problem” on a random medical take-home handout. 

While an individual’s spectrum status may arguably be relevant in some medical situations, an ingrown toenail is probably not one of them. In addition, your terminology is outdated. And your framing of this neurological difference — which in fact also brings many gifts — as a “problem” is quite simply cruel. 

Knowing your office and Dr. ____ (clearly a caring person), I have to assume this is an oversight. I ask on behalf of my family and all others with differences that you stop this practice and any others that may marginalize or denigrate your patients, however unintentionally.

Sincerely,
[Full Spectrum Mama], Ph.D. 




The Full Spectrums do have 99 problems (if you get my slightly inappropriate reference) — probably more like 999 — but “Asperger’s disorder” is not one. 

Love,
Full Spectrum Mama


Update: The doctor called and left a message apologizing and claiming oversight. I called back and left her a message saying I trust nothing like this will happen again to anyone in her office.

Le sigh. 





 
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!

Monday, December 29, 2014

THANK YOU AND GOODBYE, 2014

We just found out we missed the Lowbrow Art and Crafts Fair in nearby Western Massachusetts, where we could have found stuffies that grew out of [name withheld]’s “desire to create a stuffed toy that wasn’t striving for a contrived sense of happiness.” Apparently, such stuffies “let you sit with your feelings.”  2014 has been quite a year for the Full Spectrums, replete with a Full share of disastrophes, laffs, triumphs and “dharma gates"...those stuffies would have sure come in handy...

Welp, even without custom Full Spectrum stuffies, 2014 has been a lot about learning to feel our feelings as a family. For the spectrum-y Spectrums, we are learning to sort and identify what our feelings are, and how they actually feel – in our bodies and minds. For the growing spectrum-y Spectrum, G, we are working on finding the perfect balance between teaching pro-social habits (blowing nose) and **not** teaching him to assimilate as neurotypical. Balance for Z, who has needed stringent rules and oversight for attachment-disordered behaviors, has included progress toward being safe with making some of her own choices, while still feeling held in strong boundaries.

2014 has been an exciting year for this blog, too. Readership doubled (up to 30,000+!), comments have been lively, and  the Sensory Processing Disorder Blog Hop is a hoot and a comfort. I was awarded a funded residency at the Vermont Studio center in 2014, which I was unable to attend because of a lack of childcare; in 2015 I am hoping to be able to attend the Studio Center’s only shorter (one-week) program. I’m excited about beginning my Third Anniversary Post cycle in early January with THIRD ANNIVERSARY LISTS I: ADVOCACY, to be followed by II: ATTACHMENT DISORDERS, III: CHOOSING YOUR BATTLES, and, IV: THE COMPLAINT DEPARTMENT.

I will be accepting COMPLAINTS at my email address, jineffable@gmail.com, until late January.

Wishing you a jolly, healthy 2015,
Full Spectrum Mama



Thursday, October 30, 2014

AUTISM, EMPATHY, JUSTICE & LOGIC – A NEURO-MOMENT


My gal A and I love to have Spectrum Fests at a nearby lake where we talk feminism and injustice (our shared special interests) and our boys try to work out how to play together when their special interests don’t match. These are special times for us because once the school year hits the fan we both get pretty buried. A is a single Mom with a son on the spectrum. She used to be a student of mine at the Community College and is now about to graduate from a Seven Sisters college via its 100% full-scholarship program for non-traditional students. Go, A!

Last summer, A told me about a study she’d read claiming that logical people actually have more interest in justice, and tend to act more from the impetus of justice than do less-logical people. This made sense to US, as logical, spectrum-y, eggheaded, highly empathetic people. But it flies in the face of a lot of allistic ideas around autism.

The article, “Concern for justice linked with reason, not emotion,” contends that those of us who are “cognitively driven” tend to make the sorts of  “sophisticated analysis and mental calculation” that lead us to act based on logic rather than desire.

In other words, we don’t do kind things because we feel we should because it would be “good,” but because we know we should because it is right. That type of motivation has been shown to be significantly more compelling than emotional incentives. It leads naturally and inevitably to increased justice-orientation – and, thereby, to an increase in just actions.

Reason – a.k.a. logic – is the enemy of moral relativism as it is often used: as a tool for justifying asocial desires and actions. By asocial, I refer (perhaps somewhat polemically) to desires and actions that increase inequality and injustice. I contend that my logical nature, and that of most of the other spectrum-y people I know, precludes judging such actions as acceptable.

One of the many, many benefits of being a Professor of Ethics is learning to distinguish empathy from moral relativism. I’ve always felt that the gross disparities in peoples’ lives were unfair – and resented the attempts of people I saw as privileged to equate their problems with those of others who clearly – to me – had harder lives. Empathy means having compassion – literally, with-feeling – for someone; it means understanding them as best you can and, to a reasonable extent, acknowledging their concerns. It does not mean acting as if all struggles and challenges are equivalent – or accepting cockamamie, hypocritical excuses for what basically amounts to doing whatever the heck one wants. As Albert Einstein (a beloved Aspie role-model and ethicist, among other things) said, ““It is abhorrent to me when a fine intelligence is paired with an unsavory character. Logic precludes using intelligence to justify selfishness, or to equate the inimitable.

Mundane example: I recently mentioned to someone that there’ve been times when I’ve gotten upset in the grocery store because of money issues. They were sympathetic but then added, “Then, once you have enough money, you might start to feel guilty about having more than others, or have a hard time choosing what to buy!”

Um…no? Not. Equivalent.

It seems...logical to assume that if one has more than one needs one should do something about that rather than "feeling guilty;" and that the luxury of choice is a gift, not a burden (and, if the latter [?], not one that should be publicly bemoaned).

When A and I sit around discussing --  and, okay, sometimes bemoaning --  our situations, I know she, as a single mother, has it harder than me. We both know if we were Black or transgendered or more differently-abled than we are (or any of the other ridiculous things that can label one around here and make one, therefore, to some, “less-than” or “weird” or “automatically criminal and/or stupid and/or degenerate and/or inferior and/or, at the very least, suspect” in ways that limit opportunities and inclusion) it would be harder. That’s just logical! I think I have said this before: the only people who ever say stuff like “it’s all relative” are those privileged enough to have that belief and clueless enough to express it.  Most of us know better – and we’ve learned the hard way.

I make this point not to punish all the annoying people who think they have it sooo hard and don’t. What I want to do is draw a link to the sorts of persistent economic and social injustices that are fundamentally grounded in these types of self-rationalization – and that are typically unavailable to deeply logical people, including many on the autism spectrum.

Logical people just can’t get around numbers. If Person A has a salary of $200,000 and their “lifestyle” demands a new car every year and Person A is not logical, Person A can say to herself, “I need this new $30,000 car,” with no qualms whatsoever about those in need, such as, say, Person B, who makes $10,000 a year and is struggling to feed her family and has a car that barely functions. Person A can tell Person B, “It’s all relative.” But Person B, if she is logical, logically knows this is not true: A working car is a working car. $1=$1. $30,000 can feed four families for a year.

…Logic.

I like to believe that a logical Person B, if she somehow secured a job making $200,000 a year, and was in the same situation as Person A, above, would use that $30,000 to help those in need rather than to buy a new car because it is reasonably the right thing to do. A and I sure would. We don't just bemoan. We also plan for the day when we will be better able to help others. Those are our Special Fantasies. 

…Logic,logic, logic.

Truly logical people cannot ignore the fact that torture is torture:

When Dick Cheney calls torture ‘enhanced interrogation,’ it doesn’t make us understand torture in a different way; it’s just a means for those who know they’re doing something wrong to find a phrase that doesn’t immediately acknowledge the wrongdoing…
Whatever name Cheney’s men gave torture, they knew what it was. A grotesque euphemism is offensive exactly because we recognize perfectly the mismatch between the word and its referent. It’s an instrument of evasion, like a speeding getaway car, not an instrument of unconsciousness, like a blackjack.
Word Magic,” by Adam Gopnik in The New Yorker 

Ostensibly, the more logical you are, the more you recognize this sort of internal, mutual and/or institutional subterfuge; ideally – and in fact – logic thus makes one less prone to evasion, rationalization, justification….

Truly logical people know, logically, that there is plenty for ALL on this planet, if we omit greed on the micro (personal wealth hoarded and/or spent on thing after thing) and macro (nationalism, imperialism, huge corporations oriented primarily toward profit) levels. I am aware that’s not going to happen right this very minute – tho A and I wish it would! – but what if, bit by bit, people and institutions became more logical, and thereby more justice-oriented? What if empathy was linked primarily to real-life actions and choices that actually promote justice (rather than to a nice-seeming attitude)?
  
It makes me bonkers when allistic people assume that autistic people lack empathy. Here’s just ONE reason why:  for many of us, logic is linked to empathy as a value that must be enacted, rather than as a feeling that may be ignored – or rationalized away. Some people on the spectrum may seem self-centered, focused on their Special Interests and/or socially inept, but their literality and logical-tendencies typically make them among the most fair, just, unselfish, empathetic people around.

Love,
Full Spectrum Mama

P.S. This is the Second NEURO-MOMENT. Read the first here