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.

Sorry, being a cruel and hateful person doesn’t make you mentally ill.

Trigger warning: saneism and hate crimes. Also I use the f-word.

There’s a sentiment that I see and hear a lot, often expressed by liberals who have an unjustifiably optimistic view of humanity, that offends me more than any number of slurs against people with mental disorders. This is the idea that “anyone who could do something like that to another person must be mentally ill.”

“Something like that” could be any number of things. Killing someone. Torturing someone. Being racist or fascist. Today’s example (which actually happened several years ago but just came back into the news because a judge in Florida decided it wasn’t actually a crime) is several prison guards locking a black man with schizophrenia in the shower and running near-boiling water on him for hours until he died. I’m not going to provide a link to any of the articles because it’s that disturbing; Google if you want the grisly details.

So I came across this story last night, and because apparently it wasn’t upsetting enough to read about another hate crime against a mentally ill person being dismissed as not worthy of prosecution, I read the comments. And of course there was that person (there’s always at least one) saying, “Who really has the mental illness in this situation?”

To which I respond, THE PERSON WITH FUCKING SCHIZOPHRENIA.

Let’s get something straight. Mental illness is an actual thing. There are specific symptoms that lead to specific diagnoses. There are detectable brain differences that can be studied. Genetics play a role – often a very significant role.

You don’t just get to decide that anyone who displays behavior you don’t like or don’t understand has a psychiatric condition, any more than you get to decide that anyone who takes a long time in a public bathroom has a colostomy bag. I mean they could, but unless you have actual concrete evidence of that, you probably shouldn’t assume it or assert it as a fact to other people.

This includes, by the way, Antisocial Personality Disorder. Many people are in the habit of casually diagnosing everyone with despicable behavior, or anyone who’s an asshole, as having APD (or “psychopathy” as they’re often not educated enough on the matter to know the current diagnostic term). Nope, sorry. Unless someone has actually been diagnosed with APD by a professional, you don’t get to decide that they have it just because you don’t like or understand their behavior.

The assumption that people are fundamentally good and thus all cruelty must be caused by a psychiatric condition is 1) delusional (though not in a technical diagnostic sense) and 2) saneist. It perpetuates stereotypes about mentally ill people being violent horrible human beings while letting all sane people off the hook for their behavior – even when they commit a hate crime against a person with a diagnosed mental illness. It makes “mental illness” itself a slur.

In reality, there are many cruel and hateful tendencies in human nature. These tendencies are not the same as mental illness. Many people with bipolar disorder, schizophrenia, and the like are very gentle and empathic people. I speak from experience, of which I have plenty because I know a lot of people with these conditions and I am one. While we may have violent outbursts when symptomatic, it’s the exception rather than the rule. It’s not who we are in our day to day lives.

Conversely, there are many people who do NOT have a psychiatric condition, who are bullies in their day to day lives, who are selfish, who like to hurt others or at least aren’t very bothered by it, and who are very susceptible to peer pressure. Did every person who participated in slavery or the Holocaust have an undiagnosed psychiatric condition? Or for that matter, every person in middle school who threw rocks at me or jeered?

I volunteered at downtown shelters. Homeless people with schizophrenia aren’t the ones jumping people, they’re the ones getting jumped. Or boiled to death in showers. It’s usually the person with the mental illness who is bullied and hurt by the normal folks.

But people with psychiatric conditions can also be assholes. We can also be mean, and selfish, and petty, and cruel. Usually this is NOT because of our mental illness. Usually it’s because WE’RE FUCKING HUMAN. Yes, all the nasty stuff you normals do, we crazies can do too. But it’s not because we’re different from you. It’s because we’re the same as you.

Accept it.

Why Johnny Doesn’t Flap: a problematic parody

I came across this book in the children’s section of the library last week. It’s called “Why Johnny Doesn’t Flap: NT is OK!” The authors, Clay and Gail Morton, have a son with autism and are self-described members of the neurodiversity movement.

My first reaction to this book was delight. It’s a pretty clever parody of books that attempt to get neurotypical/abled children to be accepting of those who are different (a worthwhile goal but usually condescending in its execution). It’s refreshing and funny. It takes the point of view of the autistic child, a welcome perspective shift that needs to happen a lot more. Here are a couple snippets so you get the idea:

“Johnny has problems with communication. He will say that a math test was ‘a piece of cake’ when he really means that it was easy.”

“Johnny watches the same television shows that I do, but he never recites the opening credits word for word. In fact, I’m not even sure he has them memorized. He sure picks funny things to focus on, but that’s OK.”

There is also an entertaining “Note for Parents” at the end, which informs the reader that “According to the Centers for Disease Control and Prevention, as many as 67 in 68 children may be neurotypical.”

Despite my giggling, something niggled at me. I wondered if it would be possible to write a parody that similarly shifted perspective, but took the point of view of an individual who (for example) uses an AAC device to communicate and needs assistance to use the bathroom. I got particularly stuck on this line, when the narrator laments his friend’s lack of interest in hydraulic forklifts:

“He might never be a real expert on anything, but he’s a good person, so that’s OK.”

I thought a lot about why this line bothered me and finally determined that it’s because it attempts to subvert the ableist paradigm while still accepting it. There’s an implication that the autistic character’s value is shown by his expertise in a technical subject. Intelligence justifies his divergent neurology. Where does that leave autistic individuals who are intellectually disabled?

There are definitely connections between various forms of neurodivergence and certain strains of intelligence and creativity. This is part of the beauty of neurodiversity – of the wonderfully intricate, fragile human brain in all its variation. At the same time, these connections do not appear in every individual. Not every person with schizophrenia is a math genius. Not every person with autism is a programmer. Not every person with bipolar disorder is an artist.

The individuals who have divergent neurology without associated gifts are part of the pattern in the human race that produces those gifts, produces science, poetry, etc. But that is not the substance of their worth as human beings. For that matter, it’s not the substance of worth even for people who do have those gifts. It took me a while to learn this, because for a long time I thought that my literary abilities justified my mental illness, that my value as a person depended on how smart or gifted I was to balance out my impairment. Once I realized that that wasn’t true – that I have as much value as the Nobel Prize winning novelist, and also as much value as the homeless man who recites his poems in coffee shops, and as much value as the nonverbal intellectually disabled woman who’s never written anything at all, because each of them has the same damn value – I was able to enjoy writing for the first time in years.

But back to the book. I was curious what exactly the authors’ take on neurodiversity was, so I googled and found this interview , in which they are quoted as saying: “Why do people with high-functioning autism have a disorder while non-autistic people are ‘normal?'”

Note the deliberate exclusion of “low-functioning” autistic individuals from arguable “normalcy”.

In my opinion, this is the major issue that the neurodiversity movement needs to tackle right now. There are advocates who say “The neurodiversity paradigm is for everyone, no matter how affected and impaired; it’s for those on disability benefits, it’s for those with aides, it’s for those who communicate by nonverbal means”; and there are others like Clay and Gail Morton who say, “Neurodiversity means that mildly affected individuals should be fully accepted because they don’t really have a disorder.” Those are very, very, VERY different stances.

I have major problems with the second approach. It’s actually deeply ableist (I explained why in this post). It’s exclusionary. It’s also, I think, a teensy bit delusional. (If you really can’t figure out what you have in common with those “low functioning” autistic people, then maybe stop describing yourself as autistic?)

A neurodiversity movement that excludes those who are most impaired by their neurology is just another form of elitist garbage, and I don’t have time for that.

The neurodiversity movement that I embrace, that I want to be reshaped by, that I want to tell others about, is expressed by autistic activists like Amy Sequenzia (who is nonspeaking) and Lydia Brown. Instead of seeking inclusion as neurodivergent people within the dominant, able-bodied, neurotypical paradigm, they simply reject it. They refuse to be defined by it. Anything less than that, no matter how clever or well intentioned it may be, falls short.

Caregiving. Is. Work.

Congressional Republicans, by considering legislation that would eliminate SSI benefits for disabled children, have given me an opportunity to write again about one of my pet issues: the devaluing of caregiving.

If the politicians responsible for this particular budget-saving strategy had any ability to be honest, they would say, “We are unapologetic human scum who have no problem taking assistance from children with cerebral palsy and autoimmune diseases and cancer and giving that money to our billionaire friends so they can buy a second island.”

Of course, they don’t say that. Instead, they write:

“One rationale for this option is that providing SSI benefits to children may discourage their parents from working. Unlike Temporary Assistance for Needy Families, a welfare program that aims to help families achieve self-sufficiency, SSI imposes no work requirements on parents and does not explicitly limit how long they may receive benefits as long as the child remains medically and financially eligible.”

Yeah. Because, you know, it’s not like taking care of a seriously disabled child is work. I mean, those parents might be doing a lot of stuff that would normally be done by nurses, and they might even be doing it 24/7 and be chronically sleep deprived and on the verge of a nervous breakdown, and there might be the life of another human being depending on what they do every fucking day and night, but that’s no excuse for not having a real job.

According to this page , which cites the SSI Annual Statistical Report from 2011 as its source, about 1/3 of single-parent households with a child on SSI have a working parent (i.e., the parent is working and raising the disabled child by themselves) and 2/3 of two-parent households have a working parent (i.e., one parent works and the other takes care of the child). And according to this SSA report from 2005,

“Most children receiving SSI lived in a family headed by a single mother, and less than one in three lived with both parents. A very high proportion, about half, were living in a household with at least one other individual reported to have had a disability.”

In other words, that 1/3 of two-parent families where neither parent works is actually 1) quite small, as most child SSI recipients live in single parent households, and 2) are mostly households in which one of the parents is also disabled and unable to work, leaving the other parent as the caregiver for the child and perhaps for the spouse as well.

Such lazy people. I mean, who spends all day every day taking care of their disabled child and spouse? What kind of excuse for existing is that? Get off the couch and get a real job!

My son, Monkey, who has multiple medical issues that affect things like eating and breathing and sleeping and who also has developmental delays, does not receive SSI benefits. We applied for him at one point and were denied; the requirements are quite stringent. The other parents I’ve met whose children received SSI were single mothers who worked full time or overtime. (But, you know, lazy.) Monkey does receive Medicaid, however, which has been extremely important for him and for our family. Which brings me to my next point.

The politicians again:

“Rather than provide a cash benefit to parents without ensuring that they spend the money on their disabled children, policymakers could choose to support those children in other ways. For example, states could receive grants to make an integrated suite of educational, medical, and social services available to disabled children and their families.”

The irony of this statement coming from the very same people who want to block grant Medicaid, reinstate lifetime limits, etc – taking medical care away from the disabled children they are talking about – and who support a nominee for Secretary of Education who has no idea what IDEA is, would be entertaining if it were not so sickening.

To these people, who preach from their offices about the value of work, who are so afraid they might discourage some low-income parent of a disabled child from working, I want to say something clearly: CAREGIVING IS WORK.

It is work when you’re taking care of a patient in a hospital.

It is work when you’re taking care of a patient in a nursing home.

It is work when you’re taking care of a disabled person in a group home.

It is work when you’re taking care of a disabled person in their own home.

It is work when you’re taking care of a disabled person in your home.

It is work when you’re taking care of an elderly person in their home.

It is work when you’re taking care of a child in their home.

It is work when you’re taking care of a child in your home.

It doesn’t matter whether the person being taken care of is related to you or not, whether you are being paid or not, or what kind of building you’re in. It’s the same work. Someone has to do it if our society is going to be anything worth living in, worth even calling a society. Wherever you are, whether you make money or not, if you are taking care of another human being who depends on you for that care, then you are working.

 

For more thoughts on the ways our society systematically devalues caregiving: Caregiving vs. Capitalism

Saneism and gun control

Possible triggers: This post discusses gun violence, psychosis, and stigma/slurs against people with psychiatric conditions.

If you’re trying to keep up with the sewage that’s been spraying out of the white house lately, you might have heard that House Republicans repealed legislation that prohibits some people with some kind of mental disorders from owning guns.

I am not sure of the details of this law, mainly because I was too upset by the tenor of the articles about it to read them very thoroughly. Thus I have no particular opinion on this law or its repeal. (My thoughts on gun control are complicated; I believe guns need to be better regulated, but that the regulating should be done by a non-government body accountable to local communities. Having the government solely responsible for regulating guns might be fine until your government becomes a totalitarian entity and then it should be somewhat obvious why that’s a bad idea.)

What I do have an opinion about is the comments I read on these articles. Mind you, these were on “liberal/progressive” web pages, not Breitbart. The comments included such slurs as “mental case,” “nut case,” “mental idiots,” “deranged,” and “homicidal psychopaths,” casually thrown about with absolutely no recognition that these terms were referring to actual human beings with diverse personalities and rights and feelings. They insinuated that all people with mental illnesses of any kind are incompetent to have guns, and that all Republican lawmakers are mentally ill. Because, you know, all people with mental disorders are potential criminals, and being a greedy jerk who lacks empathy can only be explained by mental illness.

Then there are the comments on the recent mosque shooting, claiming that Alexandre Bissonette is mentally ill. This of course happens every time a mass shooting is committed by a white person. I have already seen specific claims that he must have been psychotic. As far as I know, he has no psychiatric history or diagnosis. The only justification for claiming he is mentally ill is that he is a white American male (i.e. someone the commenters identify with) who did something with motivations they don’t understand. I’ve actually seen the claim made – many times – that anyone who shoots another person must be mentally ill.

OK. A few facts. (I will not post links to my sources because they include disturbing details that might trigger some readers, but my sources are all from PubMed and you should be able to find them easily with a search.)

– An estimated 5-10% of gun violence and homicides are committed by people with schizophrenia, bipolar disorder, or psychotic depression. Put another way, 90-95% of gun violence and homicides are committed by people who are not pyschotic – i.e. by sane people.

– Of violence commited by people with these conditions, the vast majority are committed against relatives and friends. (Not strangers in public places.) Usually, the person who is psychotic believes that they are either acting in self-defense or are helping/saving/protecting the victim.

– People with these conditions are MUCH more likely to commit suicide than homicide.

– People with these conditions are MUCH more likely to be victimized by sane people or shot by the police than to commit violence against others.

If somebody does not have a diagnosed psychiatric condition such as schizophrenia, then DO NOT make that claim. DO NOT even speculate about it. It confuses people, and it contributes to stigma against the vast majority of people with schizophrenia, bipolar disorder, and psychotic depression who are far more likely to be victims of violence, or to use violence against themselves, than to inflict it on others.

Dear activists: make your protests accessible!

I tried to attend the local “Swamp Cabinet” protest at my senators’ office today. The key word here is tried.

First of all, the day did not start out well. Mr. Anarchist was out of town for work. I’m getting over a cold. Monkey was up much of the night and insisted on getting up for good at 4:15 AM. A series of accidents followed, some involving bodily functions and others involving objects being broken.

Despite all this, and despite the fact that it takes over an hour to get Monkey dressed and ready and his diaper bag packed, and despite the fact that I disrupted his routine, which can cause some major issues, and despite the drive being half an hour – by some small miracle I managed to get us to the offices on time, even a bit early. And we were prepared. We had signs and snacks and extra layers ’cause it was freaking cold.

But then.

First, there was no parking. Or rather there was, but it was all blocked off for some mysterious reason. I had to park on a nearby street and walk. This meant that I had to use the stroller, because Monkey WILL NOT walk long distances and I cannot carry him long distances as he weighs 40 lbs.

OK, so I have my enormous, medically involved, developmentally delayed two year old in a stroller. We walk through snow and some surprisingly deep puddles to the building. We’re still on time.

Oh look, stairs. Lots of stairs.

I looked for signs that might indicate a different, accessible route. There weren’t any. I started asking people who were walking by where I could push a stroller up. They didn’t know. I walked around one side of the building and up a promising looking ramp, only to find that it dead-ended at a gate with a sign saying WARNING: HIGH VOLTAGE. Then I went around the other side of the building. Finally, I saw a sign that said “Handicap access” with an arrow. I followed the sign, which led me to – I KID YOU NOT – a ramp ending in another flight of stairs.

At this point I was so desperate and pissed off that I actually hauled my 40 lb son in his stroller up multiple stairs. I don’t even know how I physically managed that; pure rage? I found the place I was supposed to meet the other protesters … there was no one there.

Later, having contacted the leader of the event about what happened, I learned that they had gone in to the office just minutes before I got there. But at the time, as I asked around, nobody could tell me about any protest going on. So I gave up and left. At which point I discovered the cleverly hidden, non-stair-infested wheelchair ramp with absolutely no signage to indicate its existence.

OK, the poor design and lack of signs is the fault of the state government, not the activist group. On the other hand, the fact is that if I hadn’t had a child with me or been encumbered with wheeled transportation for that child, I would have been on time to the protest and would have participated.

Instead – for all my political ideals – I felt completely lost and foolish and out of place, wandering around an enormous government building alone, a low-income woman with a special needs toddler, with government workers in business suits going by.

If this group wants to involve people who are disabled, or even just parents with young children in strollers, who may not be seasoned activists familiar with the layout of large government buildings, then they need to address the accessibility issue. That might mean, for example, mentioning it in their materials for the event and providing a simple map showing where the ramp is. It might mean having someone hang around for a while near the street to guide newcomers who are having trouble accessing the building.

A social and political movement that is only accessible to able-bodied, childless adults with flexible work schedules has a major problem. Period. You need the women. You need the parents. You need the working class. You need the folks with disabilities. When there are so many obstacles to overcome just in order to be there, only to find the place inaccessible, people tend to give up and stay home and resign themselves to the reality that they are just not meant to be politically involved.

Envy and the Affordable Care Act

An anecdote related by the Slovenian Marxist writer Slavoj Zizek tells of a witch who visits a peasant and offers him two alternatives: either she will give him one cow and his neighbor two, or she will take one cow from him and two from his neighbor. Without hesitation the peasant chooses the latter.

— From “Buddhist Christianity” by Ross Thompson

Like many people, I am grieving and terrified right now about the Senate Republicans midnight votes to gut the ACA and reject amendments that would retain some of its provisions (such as protection for those with pre-existing conditions). Given Monkey’s extensive medical history and conditions, this all hits very close and feels extremely personal. (And I will be at my local rally this Sunday, the 15th, to protest.)

I don’t understand how politicians can be so perfectly callous and indifferent to people’s lives; I presume they are so caught up in their world of corporate greed that they can’t remember the definition of the word “conscience.” But there is something else that bothers me, maybe even more, and that is the attitudes of many ordinary people who are not politicians.

These people do not like the ACA. They don’t like that their premiums and deductibles have gone up, and that’s totally understandable. I don’t like that their premiums and deductibles have gone up, either. But they don’t want a solution that would improve their own health costs and coverage while continuing to provide health care for the many people who have benefited from ACA’s provisions. (Such a solution might be, for instance, an integrated non-profit public system financed with higher taxes on capital gains and a progressive income tax that we would pay instead of premiums.) No, for this subset of the population, this solution is absolutely not OK. Only a complete repeal of the ACA with all its benefits and protections will satisfy them.

I am not putting words in anyone’s mouth: this is based on other people’s statements that I have heard in person (in a hospital, among other places) and read online.

Reading these comments, listening to the angry declamations, what I notice is that the lament about their own higher premiums/deductibles is inevitably accompanied by a lament that someone else isn’t paying anything, that someone else has expensive medical needs which have forced their own costs higher, that someone else is benefiting from this law which has made things worse for them. That’s the real sticking point. They hate that they are paying more for insurance than the single mom who works at Walmart and gets Medicaid. They hate that even though their own children are healthy, they are contributing to the pool of money that funds my two year old’s expensive surgeries, hospitalizations, and oxygen rentals. Why should my son affect their budget? Why should they pay a copay when the Walmart cashier doesn’t?

Their discontent is shaped by these comparisons. They don’t consider that maybe they are fortunate to have a job that pays higher than what Walmart pays or a partner with a job who’s not abusive or a child who doesn’t have a life-threatening illness. Those are other people’s needs, and yet these needs are touching their lives, making demands on them. Not demands that they can choose to attend or ignore in the form of voluntary charity, which would make them feel good and superior, but an inexorable claim enforced by the government.

The solution, then, cannot be a single payer system, because that means some form of income redistribution, and redistribution from the healthy to the sick according to need. Even if their own health care were better under such a system, it would be intolerable because of this redistribution, because others would be benefiting more. As in the parable above, they would rather have terrible health insurance as long as the single mom is uninsured, than have good health insurance that they pay into while the single mom is insured without paying.

Another parable that comes to mind here is Jesus’ parable of the workers in the vineyard.

And when evening came, the owner of the vineyard said to his foreman, ‘Call the laborers and pay them their wages, beginning with the last, up to the first.’ And when those hired about the eleventh hour came, each of them received a denarius. 10 Now when those hired first came, they thought they would receive more, but each of them also received a denarius. 11 And on receiving it they grumbled at the master of the house, 12 saying, ‘These last worked only one hour, and you have made them equal to us who have borne the burden of the day and the scorching heat.’ 13 But he replied to one of them, ‘Friend, I am doing you no wrong. Did you not agree with me for a denarius? 14 Take what belongs to you and go. I choose to give to this last worker as I give to you. 15 Am I not allowed to do what I choose with what belongs to me? Or do you begrudge my generosity?’ 16 So the last will be first, and the first last.” (Matthew 20:8-16)

If you read the full parable (not quoted here), you see that the men who worked less weren’t idling away the day in drunkenness (although if they had, I suspect the parable would be much the same). They were waiting around for someone to hire them. There was an element of chance in their being hired last, rather than of will or deserving – which actually characterizes much of our lives, from circumstances of birth and genetics onward. In any case, the owner has not taken anything from those who worked longest; he has paid them their full wages. They are not upset because they have been deprived, but because others who (in their eyes) worked less, received the same as they.

Isn’t this a sad state of mind? It’s precisely the opposite of compassion, which is an identification with the other, especially in the other’s need.

I try to keep religion out of this blog, but this is my prayer that across America, hearts and minds will be opened to the needs of others, touched with humility and gratitude, instead of this selfish pettiness. That each of us, if we have enough, can be happy to see others who have the same – or more – than we do. That we can aspire to solutions in which everyone has enough, instead of solutions in which women, children, the low-income, the disabled, and veterans are punished so that less vulnerable populations can feel better about themselves.