I don’t want to talk about gun violence

Two things happened in the last week: 17 students at a Florida high school were killed by a 19 year old; and the policeman who killed Deborah Danner, a 66-year-old black woman with schizophrenia, in her own apartment, was acquitted of wrongdoing. Both of these situations involved someone with a gun killing someone who did not have a gun.

Both of these events were very upsetting to me, as was much of the response to them. If you are a member of that poorly defined group “people with mental illness” and are feeling isolated, stigmatized, and afraid for your own life right now in a culture where 1) all gun violence is blamed on “people with mental illness”, and 2) gun violence committed against a person with mental illness is considered totally fine, I see you and I’m right there with you.

I don’t want to write this post, but I feel I have to say something. It will probably be disorganized, because my brain is disorganized right now. I have so many thoughts about this, it’s hard to say anything. I’m furious for all the children who’ve been killed or traumatized by a school shooting; I’m furious for Deborah Danner and her family and all the mentally ill people who’ve been killed or traumatized by police violence; I’m terrified for my own child who is in a public school as I’m writing this. The fact that he’s so young makes little difference; who’s to say the next shooting won’t take place at a preschool?

A stranger came up to me a few days ago in a parking lot and asked if I would support armed security guards in schools. I said I would not. I don’t think more guns is the solution to this problem. I know that seeing an armed guard walking around my son’s school would make me feel less safe, not more safe.

I do support the teenagers who are marching and staging lie-ins right now to advocate for gun control, and I hope that in the future, they will be part of a movement to take back the government from the NRA and corporations and politicians.

“But you claim to be an anarchist! We can’t let the government have all the guns!” Excuse me, our government has nuclear weapons. Nobody with any number of semi-automatic rifles is going to win an armed conflict with the government.

This is what happens with violence, is that it escalates, and it escalates, and it escalates. You arm yourself, your opponent gets bigger and scarier weapons. So you get bigger and scarier weapons, and your opponent does too. That path leads to violence and death, not a just society. Those of us with radical ideals need to look for other, more subversive means.

No, I am not for more and more guns. I am not for unregulated, individualist vigilante “justice”, nor am I for a militarized police force without accountability to the people among whom they move. I do not support a registry of mentally ill people as a way to determine who can own a gun, and I do not support your second amendment right at all costs.

Part of this problem is a problem of trust. We all feel it, I think. I certainly do. We don’t trust each other. We don’t trust our neighbors. We don’t trust our government. Therefore, many people feel that they need guns in order to defend themselves against each other.

In a just society, I think, all gun users would be accountable to their communities. The guns would be communally owned, and the local community would decide which individuals might use them. The community would decide: the people that know each person, and are at risk for being shot by each person, would make that choice as a group, and would bear the consequences of their choice.

In this vision, any police that existed would also be gun users accountable to their communities.  If a policeman used a gun in a way that his community – not a judge – considered irresponsible, he would at the very least not be allowed to use a gun anymore.

If we could build strong, self-regulated, self-governing communities with shared political and economic power, how might our relationship to guns be different?

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The people who walk away from the pharmacy counter

It happens almost every time I fill a prescription – I see somebody talking, sometimes arguing, with the pharmacy tech, in increasingly frustrated and defeated tones, and finally walking away from the counter without their medicine.

I always wonder about these people – what will they do? Will they come back later and get the medicine after all? Will they call their insurance company and work out an alternative? Will they try to make do without it? Will they end up in the ER? What happens to them?

Last week, I almost walked away without my asthma inhaler, the monthly one that controls the underlying inflammation. My copay which had been $50 tripled without warning, and the only reason I was able to pay for it was because I had a credit card. The credit card that we are trying to pay off, which it seems we will never pay off, because of things like this.

By the way, I developed adult asthma as a result of living in moldy housing. Apartments with thin windows and lots of condensation (I’ve had icicles on the inside of my bedroom windows), relatives’ homes with unrepaired leaks, etc. This is reality for so many low-income people.

Although I paid for the inhaler, I have not used it yet. I am hoping that I can get away, at least for a while, without using it, because I don’t know when I will be able to refill it. I’m just grateful that my son has Medicaid, which covers his inhalers – for now. Until they cut Medicaid, which is probably coming soon.

Last month, my mother stopped taking her antipsychotic medication after the copay increased to almost $100. I guarantee you there are other people stopping psychiatric meds because they can’t afford them. It’s hard enough to deal with the stigma and the side effects of these medicines, without going broke for them.

Is this what we want, as a country, as a society? For people to stop taking the medications that keep them out of ERs and psychiatric hospitals and prisons and homeless shelters, the medications that enable them to live?

We need single payer. We need it badly. Desperately. But we’re not going to get it under this administration, which is this week voting on a bill to weaken the ADA and force people with disabilities even farther out of public spaces (if you don’t know what H.R. 620 is, look it up).

I feel discouraged, my friends. I should be fighting, but I don’t feel like fighting, just like crying. Like curling up in a corner. Hoping my airways will magically heal so that I can breathe. Hoping my country will magically heal.

Ah, bureaucracy …

I once had a friend who joked that “bureaucracy” meant government by furniture. (Bureaus – get it?) I sometimes think that furniture might do a better job.

If you get any kind of government assistance, you get to see bureaucracy up close and personal. My son, because of his disability and our low income, receives SSI payments. Well, yesterday, I received four pieces of mail from Social Security and related agencies, telling me that he no longer qualified for SSI and that his Medicaid was being “terminated.”

Except not really. Because you see, next month, the paydays fall so that we get an extra paycheck, which puts us over the monthly income limit – just for one month. And his Medicaid isn’t really being terminated, there is a grace period and as soon as April rolls around and we are once again poor enough in the government’s eyes, I’m sure I will get the same number of pieces of mail telling me his Medicaid has been approved again. Oh, they will probably send me the whole welcome packet for his MCO all over again, too. They do that every time his Medicaid is reapproved.

And all of this will happen twice a year, because of how the paydays fall. Efficient? Um, no. Enough to give a person a heart attack the first time it happens? Yeah.

I’ve lost count of the number of times we’ve received notices telling us that something was terminated or our benefits had gone to $0, only to call and be told to disregard it. “Everybody’s getting that notice for some reason! Just ignore it.” OK, can I have the last hour of my life back?

Since we’re talking about SSI, the rules surrounding this program are just about enough to make nobody want to get SSI ever. There are rules like – Nobody can give you a gift card that can be used to purchase food or shelter. (Well, they can, you just have to report it as income.) Personally, I don’t know anywhere where you can purchase shelter with a gift card. But I’m glad the government is making sure those low-income disabled people don’t get one cent more than they deserve!

One of the many problems with capitalism is that, in order to have anything remotely resembling a humane society, it necessitates these kinds of government interventions in people’s lives. Socialism usually gets blamed for bureaucracy, but the thing is, a capitalist society with no SNAP or WIC or social security or TANF or Medicaid or Medicare or rent-controlled housing etc etc etc, is a society in which a lot of people DIE. It’s a society full of poverty and homelessness even greater than what we have.

And nobody really wants that. Homelessness and poverty are not aesthetically pleasing; they’re bad for business.

Like it or not, capitalism and bureaucracy are bedfellows.

How to be a friend to someone with a mental illness

 

I don’t have many friends. The friends I do have, I value highly; so it makes it all the more painful when they walk out the metaphorical door. I’ve lost several friends in the past couple years, and recently upset another. If I believe their version, this was because I am a lousy friend. Sadly, these are friendships I cared deeply about, into which I put real effort, and my efforts still were not enough.

There are two sides to every story; mine is that those things which they took as evidence of me not caring about them were actually misunderstandings caused by my autism and, to a greater degree, my mental illness. I have received advice on how to be a good friend to neurotypical people; I would like to return the favor.

Being friends with someone with a mental illness (such as depression, bipolar disorder, schizophrenia, borderline personality disorder, or any combination of these) is probably more work than being friends with a neurotypical person, which raises the question: why bother?

Well, because we are people, and we have other traits too. Maybe you and your friend both share a passion for music, or for books, or for horses or cats. Maybe you grew up together, or went through college together. Your friend might have a wonderful ability to make you laugh, or to see the world differently. Your friend might be an amazing artist, or a deeply empathic listener. And one thing that all of us crazy folks have in common is that we have suffered; which means that when you’re suffering, we are unlikely to throw out platitudes like “God doesn’t give you more than you can handle!” We already know, from personal experience, that that’s not true.

So, here we go …

1) Be the one to reach out. Both people have a responsibility to keep a friendship going, and you shouldn’t be the one reaching out every single time; you should, however, expect to reach out more than you would with a neurotypical person.

This may sound unfair – both people should be reaching out equally, right? But the fact is, when you have a mental illness, there are many internal barriers to reaching out. We have a tendency to get trapped in our own heads, for various reasons. We might be depressed, or we might be spiraling into psychosis. We might be so disorganized in our thinking that we just don’t think of it, or we can’t figure out how to put the words “How are you?” together. Or, we might not reach out because we’ve decided, for some reason, that you hate us.

So when we overcome all of these barriers and reach out to you, you should see this as the equivalent to a neurotypical person reaching out 5 times. It’s the same amount of effort, the same degree of motivation to know how you’re doing or spend time with you. Really!

The flip side of this is that, at times, we may seem “needy” and be messaging you more than you like. If this is the case, it’s OK to let us know. Please just be nice about it.

2) Don’t take it personally. We forgot your birthday? We said we were coming to your party but then canceled last minute? Before you interpret these things as a personal slight, check in with us to see how were doing. These things are probably signs that we’re struggling, not signs of malice or indifference directed at you.

3) It’s OK just to BE together. Neurotypical people like to get together and do things. I like to do that sometimes, but often I don’t have the energy or resources for a highly stimulating activity. You will be able to spend more time with your neurodivergent friend if you’re comfortable just hanging out with them, not trying to cram endless activities into a two hour slot. Sit around, talk, go for a walk, play chess, do a puzzle, have coffee. If that requires too much energy for them, watch a movie at somebody’s house. (Movie theaters cause anxiety and sensory overload for me, personally. This may not be true of your friend.) Sit on a park bench together and space out. It’s all good!

4) Don’t invite them over and then, when they show up, have four other people at your house. Neurotypical people love to do this for some reason. Just because I have the energy to spend time with you, does NOT mean I have the energy to spend time with you and all your other friends. Sorry. Also, letting me know five minutes before I get to your house that other people will be there, isn’t any better.

5) Forgive them when they screw up. Forgiveness does NOT mean you stay in an abusive friendship, or that you tolerate endless amounts of hurtful behavior. It does mean that if you have a basically good, caring friend who does something crazy once in a while, you stick with them.

For example, let’s say your friend goes into a paranoid rage one day and lashes out with curse words in a manner that is out of character for them. OK, they shouldn’t have done that, and they should apologize. And when they apologize? FORGIVE THEM. I know, it’s easier said than done. But I have forgiven neurotypical friends for some pretty hurtful things, so I believe it’s doable.

And if all of this just seems not worth it to you? Well, then it’s not. But if you care about someone with a mental illness and you think they are worth the effort, I hope that these tips are helpful to you.

 

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.

 

 

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.

Holiday update

One of my posts has recently gotten some attention, which I’m glad about, because the subject – relations between parents and autistic people in the autism community – is something I care deeply about. Of course the attention also triggered my anxiety and paranoia, so I’ve been hiding. But thank you to everyone who has read, liked, reblogged, commented, and/or followed! You all rock.

The other reason I’ve been quiet is that ’tis the season of respiratory viruses, which means Monkey is having trouble with his breathing. We’ve been spending a lot of time in doctor’s offices and some in the ER. He is on some new medicines, so hopefully things will get better and not worse.

I have ideas for posts but they will have to wait until I have the mental energy to organize them. In the meantime …

Hope all of you have a wonderful time celebrating (or not celebrating) whichever holidays you celebrate (or don’t)! Life is fragile. Be well, friends. ❤