What do you do when the government hates you (sing to tune of “Drunken Sailor”)

This administration – actually, the entire GOP with few exceptions – has been, and is, conducting a systematic campaign to dismantle protections and supports for people with disabilities. Of course, they have other targets as well – immigrants, people of color, Muslims, LGBTQ. But I’m going to focus on the disability aspect, because it doesn’t get as much attention, and of course, it has a very immediate effect on my life.

Let’s look at a list of changes the administration has made, or attempted to make, specifically targeting disabled people:

  • Block grant or per capita caps on Medicaid (attempted)
  • Allow health insurance to discriminate against/price out of the market people with preexisting conditions (attempted)
  • Destabilize the insurance markets so that only people with preexisting conditions will remain buying full insurance packages, at unaffordable prices (accomplished by executive order)
  • Cut Medicaid by trillions of dollars (in process – budget resolution passed by House and Senate)
  • Cut Medicare (in process – budget resolution passed by House and Senate)
  • Cut SSDI (in process – budget resolution passed by House and Senate)
  • Cut SSI (in process – budget resolution passed by House and Senate)
  • Weaken IDEA by getting rid of established guidelines for implementation (accomplished – rescinding of 72 Dear Colleague letters relating to special education)

Regarding the last one – the rescinded letters are already in the process of disappearing from the department of education’s website. You can find a list here: Dear Colleague Letters  Since last night, many of the links to the letters have become unavailable. There’s a good chance that by the time anyone reads this blog post, they will all be gone.

Remember when the White House page on disabilities mysteriously disappeared?

I wish I could muster up a bitter joke about all of this, but truthfully I see no humor in it. There’s nothing funny about the people in control of the government having it out for you and your child. There’s just a continual ebb and flow of anger, grief, and fear, and a persistent chill.

The White House says this is about trimming away unnecessary bureaucracy. That’s not what it is. I dislike bureaucracy as much as anyone (maybe more than most, since I have to deal with it every day in the medical and school systems), but this is simply a stripping away of protections and supports from a particularly vulnerable population. A population that has fought hard, for decades, to have these protections in the first place.

I can’t get my brain around this level of selfishness, greed, lack of empathy. Sometimes I find myself staring into space asking no one in particular “Why do they hate us so much? Why?”

In reality, they probably don’t even care enough about us to hate us. Hatred expends too much energy.

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Not a fan of #MeToo

Trigger warning: Ironically, this post is about the need for trigger warnings.

My Facebook feed was flooded yesterday with “Me too” posts. Some had no details, others were graphic and triggering. Really the whole thing was triggering. I’m not sure what this campaign is going to do, other than trigger some already traumatized women to relive their experiences and/or become depressed. Or maybe it’s just me.

Yes, sexual abuse, harassment and assault is rampant. Why is the onus on women who’ve experienced these things, and survived them, to open up to the world about it in a very exposed, impersonal forum like Facebook or Twitter – possibly upsetting other survivors in the process? Who does that really help?

Don’t get me wrong. There’s bravery in sharing one’s story. There are survivors out there doing powerful advocacy work.

But this kind of viral media campaign isn’t that. Most of the women (and MEN – why aren’t male survivors being encouraged to join in?) who I personally know have complex PTSD from ongoing abuse, did not post, or simply copied and pasted the original post. Probably because to do more than that was too triggering. Or maybe they don’t want everyone to know what happened to them (and you know what? That’s OK too!).

Is it just me? I looked at my feed again this morning and immediately felt the panic and depression setting in …

Who is this helping? Who is it supposed to help?

And please, if you’re going to do this and post details, PUT A TRIGGER WARNING.

Neurodiversity’s gatekeepers

I read this yesterday, and I want to link it here because it’s so good and so important: Dr. Simon Baron-Cohen Does Not Understand the Neurodiversity Paradigm

Here’s a quote from the article:

“The Neurodiversity Paradigm says that all brains are good brains and no one is disordered or in need of a cure or treatments that work to the detriment of their personhood.” – Max Sparrow

I passionately agree with this interpretation of the neurodiversity paradigm. Unfortunately, Dr. Baron-Cohen is not the only one who espouses the view that if a condition affects one’s functioning beyond a certain point (defined by whom?), it is no longer a “difference” or part of the person’s identity, but a “disorder” to be cured by any means. I hope that the people who see it this way are in a minority, but I don’t know that they are.

Here’s another example of this type of thinking:

“Autism is a natural form of human neurodiversity. Labeling it as a “mental disorder” or a “disease” has no scientific basis, has no benefit for Autistic people or their families, and leads inevitably to stigmatization, shame, and marginalization. Blind people, Deaf people, and many other disabled people get the services and accommodations they need without being labeled as having mental disorders. We don’t have to call autism a disorder or a disease to acknowledge that Autistic people are disabled and can require accommodations. Stop worrying about the latest changes to the DSM’s diagnostic criteria, and just remove autism from the DSM entirely, just like homosexuality was rightly removed years ago.” – Nick Walker (emphasis added)

Ohhh, OK, I get it. Having autism is fine, because it’s not a mental disorder. Better take it out of the DSM so that the stigma from all those mentally disordered people doesn’t rub off on us! And if an autistic person has a comorbid mental illness, we’ll just stigmatize them for that, not for the autism.

To sum it up another way:

Blind = “Hey can you teach me to read Braille?”

Deaf = “I really admire your culture!”

Physically disabled = “Thanks for the curb cuts!”

Autism = “Natural form of human neurodiversity.”

Mentally ill = “AHHHHH HELP THERE’S A CRAZY PERSON SHARING A DIAGNOSTIC MANUAL WITH ME GET ME OUT OF HERE!!!!!!”

I think of people who think this way as Neurodiversity Snobs. They are the self-appointed gatekeepers of the neurodiversity movement. They stand at the gate, checking everyone’s credentials:

“Ah, I see you have a job and you’re married? Quirky but brilliant? Go right in.”

“Wait a minute, wait … this says you’re psychotic and frequently homeless? I’m sorry but you can’t go in. You make a bad impression and … you’re just not really our type.”

“Hi there. Looks like those accommodations in college really worked for you! Well, go in, they’re just serving the cocktails.”

“You’re intellectually disabled? Um … I’m not sure what happened but they shouldn’t have sent you here. That was a mistake. Yeah, just head over there to the Eugenics Division, they should help you out.”

Fuck that. Seriously, fuck it.

I reject any articulation of the neurodiversity paradigm that excludes certain people because they don’t have the “right kind” of neurodivergence.

Signs that you might be parenting a medically complex child

You accidentally put Miralax in your coffee this morning.

Or, you accidentally put Thick-It in your coffee this morning.

You proceeded to drink the Miralax/Thick-It infused coffee because you were either too sleep-deprived to realize what you’d done, or too sleep-deprived to care.

Your energy level ranges from “tired” to “so tired I can’t remember my zip code.”

You send your significant other to pick up your child’s latest prescription, because you are avoiding the pharmacy tech that you caused to cry last week.

You’re on a first-name basis with the person in charge of “incontinence products resupply.”

You make To-Do lists on the discarded backs of Tegaderm bandages.

You are weirdly excited by velcro.

You own a laminator.

Alternatively, you continue to do all your laminating at Office Depot, even though you know it’s more expensive in the long run, because having other people print your stuff is one of your only opportunities for face-to-face human interaction.

All of your mom friends are online.

Your everyday conversation is peppered with acronyms that literally no one understands except therapists, nurses, and your internet mom friends. Like, not even your partner. Some therapists aren’t sure what you’re talking about either.

You spend your less-than-ample spare time educating your elected representatives about how health care actually works.

People get confused when they walk into your home for the first time, because your living room looks so much like an OT gym.

Your child’s OT asks if she can see clients in your living room while her building is being renovated.

Your child’s “pretend doctor” kit is composed of real medical supplies collected from the hospital. (“Hey, wanna put the anesthesia mask on Daniel Tiger? I sure hope he hasn’t eaten in the last 12 hours!”)

All of the ads in your Facebook sidebar are for adaptive strollers and catheters.

You cope with the oddities of your life by making darkly humorous lists about it, and instead of ending with something trite about how precious your child is (which should be everyone’s fundamental underlying assumption because DUH they are your child), you end the list with a little meta commentary on the fact that you made a list about these things. Then you laugh hysterically and take an Ativan.

 

Sanesplaining

I got into an argument with a stranger the other day on a mutual friend’s Facebook page. It started as a debate over the role of mental illness in the Las Vegas shooting and very quickly became a discussion of whether I was qualified to have an opinion on the matter. My opponent, a white male psychology student, told me “You don’t understand mental health.”

Well, maybe that’s true. Maybe I don’t understand mental health. But I think I have a decent understanding of mental illness – primarily the depressive-bipolar-schizophrenic variety and PTSD – from having lived with it for most of my life and having lots of contact with people who live with it, treated and untreated. Of course I am always learning more and there is much that scientists don’t understand either; and my knowledge and understanding of things like substance abuse, personality disorders (including antisocial personality disorder), is more limited.

There is no evidence that Stephen Paddock was mentally ill or that “counseling” would have prevented what he did, had he been motivated to seek it out (certainly money was not a barrier for him). He carefully and deliberately planned the massacre over a long period of time in a way that somebody with the cognitive impairments often accompanying psychiatric illness would be unable to do. His preparations included modifying legally purchased rifles to function as automatic weapons and installing surveillance cameras outside his hotel room.

I hold the unpopular opinion that some people simply enjoy hurting others and are basically bad people. You can label that a mental illness if you want, but these people are often very clever, very manipulative, good at hiding at their crimes and appearing charming. They have no functional impairment or apparent distress due to their actions. Very sadly, I have some personal experience with this, too. What do we call these people? What do we call the child pornographers and the serial killers?

That’s the discussion we could have had – the psychology major and I. But the discussion we ended up having, centered on me and how ignorant I am. He picked at my use of words; he was passive-aggressive and condescending. As it happens, I have not been terribly stable lately, and I snapped.

No doubt, the strong and colorful language that I ended up using, completely discredited everything I’d said. But I was discredited in his mind long before then. Why? Probably because I’m female and not a psych student and I disagreed with him. Disclosing that I’m crazy (and using the word “crazy”) didn’t help my case.

What upset me, and left me in a fragile and agitated state for the rest of the day, was not that someone disagreed with me. I actually enjoy debate. It was the way he picked apart everything I said. It was the implicit sneer in his comments. I hate to think that this person may become a therapist. I hate to think that people will go to him for help and that he will impose his preconceived ideas on their realities, then pick at them and condescend to them when they object. We don’t need any more therapists like that. That’s the last thing we need.

Navigating the world with a brain that filters and connects things unpredictably, that turns on you at odd moments, is scary. Depending on how much insight we have into our condition, it can make for a lot of self-doubt and self-questioning. “Are my perceptions here correct? Is this real? Will I look back on this later and realize my thinking was totally distorted? Or am I right this time? I’ve turned out to be right before.” Having a couple of trusted individuals whom one can consult in these instances of doubt is very helpful. But this dependence on others to confirm or dispute our interpretations of our own experiences makes us very susceptible to gaslighting, and to what I’m going to call sanesplaining.

Sanesplaining is when someone who does NOT have a major psychiatric condition themselves, tells someone who does what their condition is “really” like, what they experience or should experience, how they feel or should feel. It also involves discrediting and disputing the person’s thoughts and opinions. I’m going to use an example here from one of my favorite movies, Benny and Joon.

Joon is a highly intelligent young woman with an unspecified mental illness (mostly resembling schizophrenia). She is cared for by her older brother Benny. After Benny finds out that Joon has begun a sexual relationship with their roommate, Sam (who’s also neurodivergent, with a learning disability and some autistic traits), Benny goes into a rage and throws Sam out of the house. At this point, Joon tells Benny, with strong feeling and conviction, “I love him!”

“Yeah?” says Benny. “Well you are crazy.”

There you have it. Sanesplaining in a nutshell.

Our feelings and thoughts are constantly in question. It’s not always that overt. It might be a family member asking “Did you take your meds?” when we’re trying to explain why we’re upset about something they’ve done. It might be a psychiatrist saying “No, that’s not a side effect of this medication”. (Hint: if your psychiatrist says this, FIND A NEW ONE.) Or it might be some douchey psychology major on the internet, saying “You used a clinically imprecise term, therefore your opinion is worthless. Your lived experience doesn’t matter.”

Functioning labels for mental illness?

I don’t know if this is a recent development or if I’ve only recently noticed it, but for the past year or so I’ve been seeing lots of articles using the terms “high-functioning” and “low-functioning” to talk about psychiatric conditions like depression. Apparently, using them for autism wasn’t bad enough. The autistic community has addressed, many times, the problems with these terms in the context of autism; I want to discuss them in the context of mental illness.

Many of the points to be made are the same as for autism. We all function differently at different times and in different circumstances. The resources available to us – which include money, supportive family, good quality therapists – can make a tremendous difference. A person can have multiple mild comorbids that, together, severely impact functioning, which makes terms like “high functioning depression/autism” linguistically imprecise and misleading. (I don’t have a problem with severity labels. While functioning labels describe the person, severity labels describe the condition. Important difference.) Finally, dividing people into “high” and “low” diminishes the challenges faced by one group and the autonomy of the other, and tends to create division rather than alliance.

There is one big difference from the discussion surrounding autism: mental illness can be medicated. Not always successfully – and medications bring their own problems. But it introduces yet another variable.

One person might be “high-functioning” on medication and “low-functioning” without it. Someone else might be “low-functioning” on medication because of treatment-resistant symptoms. Another person might be “low-functioning” without medication but unable to take medication because they previously developed Neuroleptic Malignant Syndrome, or unwilling to take it for various reasons. And yet another person may be “high-functioning” without medication and choose not to take it, even though it could potentially resolve their symptoms, either because of previous side effects or they just don’t like the idea, etc.

Personally, I function pretty well ON medication … when it’s working. By functioning pretty well I mean I get the necessary things done. My son gets his medicines and his food and his diapers changed, and he gets to school and therapy and medical appointments. Those are the most important things, so I make sure they happen. I make myself acceptable-looking in public even if I haven’t showered in a couple of days. Things like cooking, cleaning, talking to people, those often take a back seat when my mood dips. I don’t always have the energy to brush my teeth, or to walk across the room for something that isn’t an emergency. I do my best though and I have enough good days to make up for what I’ve let slide on the bad days.

Again, this is ON medication. I am also aware that my current medication regimen won’t work indefinitely.

I’ve read too many articles where people who identify themselves as “high-functioning” anxious/depressives don’t even address whether or not they take medication, or why/why not. But if we’re going to talk about functioning, medication matters, because one of the primary purposes of medication is to restore/increase a person’s ability to function in society. It matters, regardless of how you feel about medication. It has profound implications for society, for how we think and talk about human value, work, autonomy, responsibility.