New rule: only the crazy people get to complain about psych meds

OK, it’s not really a rule (except in my personal fantasy world). But I am tired of sane, neurotypical people talking about how terrible psychiatric medications are. Really tired of it.

Now, if I want to talk about how terrible psychiatric meds are, I can do that, because I take them. I actually experience the side effects. Same goes for other people who take or have taken them. It’s kind of like, I can complain about my parents, but if some random person comes and says something bad about my parents OH HELL NO.

So I might say, in a certain mood, “I hate that I’m on all these meds.” Another person who’s weaned off their meds might say, “I think it’s ridiculous that they had me on 5 medications,” and I might commiserate about the imprecision of current psychopharmaceuticals. But if a sane person who’s never taken psychiatric drugs comes and says “The medication cocktails people take for mental health problems are ridiculous,” OH HELL NO.

Because you don’t get to decide if it’s ridiculous. You don’t live with my brain. You don’t get to decide if it’s worth it for me, any more than I get to decide if it’s worth it for somebody else. The only person who can decide if the meds are worth it is the person taking them.

Let me say that again: The only person who can decide if the meds are worth it, is the person taking them.

That’s true whether the person decides it IS or ISN’T worth it. Telling somebody “The side effects can’t be that bad, maybe you’re imagining them,” or even “This medication can’t cause that side effect!” (thanks ignorant psychiatrist) is ableist. Telling somebody that “these medications are serious and have serious side effects!” (duh) and therefore I shouldn’t be taking them (thus assuming that the problem I’m taking them for isn’t serious) is also ableist.

Why do people have such strong feelings about medications they’ve never taken, anyway? How often do you hear people who don’t take blood pressure medications complaining about blood pressure medications? People who don’t take seizure medications complaining about seizure medications? (Some of which are the same medications!) Do people who don’t take asthma medications post memes saying that instead of risking oral thrush from steroids, everybody should just breathe clean air?

Dear sane people: stop telling me how to feel about my medications. My decade+ of experience with them is much more complicated and nuanced than your whitewashed view of this matter will ever be.

Yes, even if your whitewashed view is based on a family member’s experience.

Thanks.

 

 

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Some thoughts on Medicaid work requirements

This morning, the Trump administration announced that states that wish to impose work requirements for Medicaid recipients may do so. This is not at all surprising, but it is disturbing.

Now I’m not interested in the actual motivations of the people running the show, given that they are A) morally hopeless, and B) so deeply loathsome that one cannot even use garden-variety insults to describe them without feeling sorry for the object or body part being compared to them (I mean, really, what did an anus ever do that was so horrible?). However, the argument they offered for it is pretty interesting, so let’s talk about that.

You might think it would’ve been all about how they were concerned with reducing the deficit (you know, that thing they just increased last month with their giant tax cut for rich people). Actually, their motivation, according to them, is purely charitable: they are going to increase the mental well-being of poor people by making their health care benefits dependent on their employment status. Yes, really. Somebody said that with a straight face in front of reporters.

‘”Our fundamental goal is to make a positive and lasting difference in the health and wellness of our beneficiaries [by making it harder for them to get health care], and today’s announcement is a step in that direction,” said Seema Verma, the administrator of the federal Centers for Medicare and Medicaid Services.’

‘”Productive work and community engagement may improve health outcomes,” Brian Neale, the director of the federal Medicaid office, said.’

‘”This is not, as some would have you believe, a punitive action aimed at recipients,” said [Republican Governor Phil Bryant]. “It will actually help this population reap the rewards of a good job [or of a really crappy one that pays poverty wages and treats them like toilet paper, since that’s probably the only kind of job they’ll be able to get].”‘

NYT article

(bold portions are mine)

While there will be exemptions for children, elderly people, and people who are considered legally disabled, this requirement (in states that choose to implement it) will add an additional bureaucratic hurdle and make health care inaccessible for people who are not “legally disabled” but are nevertheless unable to work at the jobs actually available to them. In many cases, these will be people with mental conditions and/or health problems that are disabling but don’t meet the official criteria for disability. Withholding health care from these people is both immoral and counterproductive.

But oh! The administration is allowing for volunteer work and other forms of “community engagement” to fulfill the work requirement. So what’s bad about that? What’s bad about getting people engaged in their communities?

Well, nothing … I mean, community engagement is good. Work is also good. Not looking at the systemic obstacles to engaging in work and one’s communities, while simultaneously threatening people with poor health and maybe death if they don’t engage in those things, is not good.

What’s really toxic about this whole thing is its view of the person.

First, although Verma refers to “the soft bigotry of low expectations” of those who oppose who work requirements for Medicaid, it is those who support them who really have low expectations. They expect that people do not want to be active in their communities; that people do not want to work; that people do not want to be meaningfully occupied. I strongly suspect that most people actually do want these things, and that in most cases of unemployment and disengagement it is not a lack of desire that interferes or even necessarily a lack of ability, but a lack of opportunity.

Thus, Republicans are ostensibly trying to address a problem that doesn’t exist (lack of motivation) while ignoring the actual problem (lack of opportunity), which is largely a product of their own economic policies.

Furthermore, the belief that community engagement can somehow be measured by the government (this by people who claim to believe in less government), that one’s contributions to society can be quantified and deemed worthy or not worthy of medical care, is so toxic I am coughing on the fumes right now.

I believe that everybody should be housed, fed, clothed, and provided medical care, to the extent possible in a given society, because they are people living in that society. And then – THEN they can give back. Not the other way around. Take care of people’s basic needs, and they will seek out mental and spiritual fulfillment in the form of work and caregiving and volunteering and art and science and dialogue and meditation, and in so doing they will enrich their communities. It’s Maslow’s hierarchy of needs, people! The foundation is those basic, physical needs on which life depends. Family, self-esteem, creativity, risk-taking, all builds on that foundation. You can’t turn the pyramid upside down and expect it to balance.

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.

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.”

Traffic tickets: a regressive tax on driving

In case you didn’t know: you don’t have to speed or drive recklessly to get a traffic ticket. I received a ticket last week and I wasn’t even driving the car. My crime? I forgot to put my seat belt on right away.

I was distracted by my 3-year-old having a meltdown in the back seat. A few minutes after my husband pulled out of the parking space, I realized I wasn’t wearing my seat belt and I put it on. But it didn’t matter. In those few minutes, a cop had seen me. It didn’t matter that I’d already fixed my brief mistake. I was given the choice between paying a fine of $82 (plus increases to my car insurance) or going to court. I chose to go to court – taking the risk of court fees being added to a ticket that we already can’t afford.

$82 is a lot of money to us. That’s a month of running water. That’s a week of food.

Every month, do you know what we have left after we pay the rent, the utilities, the car insurance, student loans, our health insurance premium, the monthly payment for Mr. Anarchist’s brief ER visit months ago which we will spend a year paying off even though we’re paying for health insurance? About $200. For a month’s worth of gas, food, hygiene supplies, any medical copayments should we splurge on visits to the doctor’s office. I have asthma and I can’t afford the copayment on my inhalers. We can’t afford Monkey’s clothes and shoes and formula. We’re trying to get Medicaid to cover his diapers. It has nothing to do with irresponsible spending. The math just doesn’t work.

So that’s the financial situation, and the state adds $82 for 3 minutes of not wearing a seat belt.

That’s a tax on driving. And it’s a regressive tax. Somebody making a decent income might not enjoy paying an $82 fine, but they’re not going to go hungry or not fill their medications because of it.

Pass the acceptance, please

Apparently this Saturday is the beginning of Autism Awareness Month. (It’s also my local library’s spring book sale, but that’s probably not as exciting to you all as it is to me.) Or, better yet, Autism Acceptance Month. Because people are already aware of autism, aren’t they?

People are aware of autism as something so horrible that it’s better to let their child die of measles or be paralyzed by polio than risk the (scientifically dis-proven) vaccine-induced onset of autism. They’re aware of autism as something so horrible that it excuses a parent killing her own child. Does this kind of “awareness” help autistic people function in society, form meaningful relationships, find employment, live rewarding lives?

People are also apparently aware of autism as something that has a particular “look” – hence the often made comments “You (your child) doesn’t look autistic!” (I guess autistic people are supposed to be green??)

Forget about awareness. All it does, as far as I can tell, is make people think they know something when they actually don’t.

You know what I would like? I would like to be able to take my almost-three-year old son anywhere in public and not be glared at, told I shouldn’t be there, or hear muttered unkind comments. I would like to be able to take him to story/craft time at the library and not see him excluded by a particular parent volunteer because she doesn’t understand his behavior.

((Do you know how much it hurts, after a lifetime of being excluded by neurotypical people, to see your son (who is totally sweet and awesome) being excluded before he’s even three years old? It’s easy to say to someone who’s been rejected and excluded by other people, “Well, you’re such a cool person, that’s their loss.” It’s even true, but it’s incomplete. Because when you reject and exclude me, that’s my loss, too. When you reject and exclude my son, that’s his loss. That’s our pain and our anger and our loneliness, every freaking time.))

I shouldn’t have to put a big sign on my kid that says “I have special needs! Be nice!” in order for people to treat him with kindness and respect. Maybe I’m being overly idealistic here, but it would be cool if people could treat him that way just because he’s, you know, a PERSON.

What I want for him is acceptance. Acceptance, understanding, and support. I want people to see his awesome personality AND his differences, his challenges AND his gifts, not one or the other as if they’re incompatible. Because it’s all rolled up in the same human being.