Bubbles in the sun

I write a lot of angry posts, because I’m angry a lot. I have reasons to be angry. But there are reasons to be happy, too, and this is a happy post. Today I watched my son and a little girl who’s spent most of her life fighting for it, play outside together.

I’ll back up for a moment. Earlier in the day, I took Monkey to a group activity with other children his age. During the hour we were there, he did not talk to any other children and none of them tried to talk to him. He spent a large chunk of his time waving a stick in front of his face and scripting, which is his favorite activity right now. At one point another little boy ran into his stick and decided that Monkey was “mean.” I then got to hear his mother’s comments about how my son shouldn’t be waving a stick around (probably true, but good luck stopping him).

This is pretty typical of our social interactions lately. Monkey hasn’t had a play date in months, since my last mom friend left the area and then (for bonus points) told me she didn’t want a friend who talked about her kid’s health problems all the time. When he is around other children, he doesn’t know what to do, and they don’t “get” him.

Anyway, we ran some errands and went home. Monkey relaxed with his favorite TV episodes and waved his stick without constraint. It warmed up outside, sort of; it was sunny enough to pretend it was warm. We went out into the courtyard of our apartment complex to play with the giant bubble wand, and were joined by a little girl who lives in another apartment with her grandmother. We’ve run into them several times before.

Monkey and the little girl took turns with the bubble wand for a while. Then I made bubbles, and they chased them. Then they chased each other. While they ran around, I learned from her grandmother that, although her hair has recently grown back in, the girl has been battling cancer since she was a year old. I then shared Monkey’s medical history, as best I could with the language barrier we were dancing around. We watched our children, both of whom have spent too much of their short lives in hospitals, and in pain, and isolated, and hooked up to medical equipment, run and scream and laugh together on the sunlit grass.

Soon they had to leave, although the girl didn’t want to. The moment broke like one of Monkey’s bubbles, but that unexpected human connection, so close to home, stayed with me. Monkey kept telling me, excitedly, that the girl had played with him. He felt it too.

I hope they’ll get to play together again.

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.

How to lose a friend (when you have a child with special needs)

1) Start out with a baby with unexplained delays. Befriend a mom whose baby also has unexplained delays. Talk a lot about your babies and their delays.

2) Live in affordable housing, in an apartment that’s not big enough to put all your stuff away even on those days when you have the energy to try. Make your living space look like a disorganized hospital by lining up oxygen tanks in the entryway and hanging nasal cannulas off chairs.

3) Find ways for your child to be in the hospital a lot; it interferes with scheduling play dates, and also makes your friend feel obligated to care even after the novelty has worn off (like, really? the hospital again?). Ideally, this should start happening right around the time that your friend’s child is outgrowing her delays and needing fewer services. It also helps if you can get a few new, unexpected diagnoses during this period to stress over and talk about in detail.

4) Share hilarious anecdotes, like how you once splashed yourself in the face with your child’s lymph fluid while emptying Jackson-Pratt drains. (Also a great way to avoid making new friends, should you find yourself in a group of moms.)

5) Keep venting about therapists, doctors, DMEs, and your concerns about your child’s development, while your friend has nothing to say in that area because her child is basically typical now and this stuff is no longer a significant part of her life.

6) Try to convince yourself she’s not passive aggressively telling you something when she cancels play dates at the last minute “because she has to do laundry”, or leaves food on your doorstep after you get back from the hospital instead of coming in. Keep texting her to ask how she’s doing and if she wants to get together, even though you’re always the one initiating it. Let your suspicion and resentment simmer quietly.

7) Stop texting her for a while because you are completely overwhelmed with illness, ER visits, pediatrician visits, another sleep study, trying to get your child to tolerate a nebulizer (no really, it’s an octopus!), trying to figure out the whole process of transitioning from early intervention to preschool, and scheduling two different autism evaluations because the people from the first place stopped calling you back and still haven’t given you a date. Notice in some part of your subconscious that she hasn’t commented on any of your medical updates on Facebook, even when your son was in the ER on Christmas Eve.

8) Ask how she’s doing. When she doesn’t respond within ten minutes, ask if she’s ignoring you.

9) Get a lecture about how you haven’t been contacting her either, and how she’s been really busy with buying a house in an upscale neighborhood so her daughter can go to the best preschool.

10) Drawing on months of carefully controlled, slow-simmering resentment, say something sarcastic implying that your life is harder than hers. Be told that you’re a crap friend because all you talk about is your child’s medical issues and she doesn’t want to hear it.

11) Completely explode. Use profanity. Be as insulting and mean as you possibly can. It’ll feel good for about 10 seconds. Maybe a full minute. Make sure there’s no possible way she’ll ever want to hear from you again.

12) Take a benzo so you can settle the adrenalin enough to get some sleep, because you’re touring the special needs preschool in the morning. Feel guilty and analyze the reasons why you’re a horrible person.

13) Realize that you should have let the friendship die quietly months ago, and the main reason you didn’t was because it was your only shot at play dates for your socially challenged son.

14) Decide to do better next time.

Trust me, this works really well. I think it might actually be impossible to keep a friend if you faithfully follow all these steps. Good luck!

When you’re low income, everything you do is wrong.

I’m almost finished reading Linda Tirado’s book Hand to Mouth: Living in Bootstrap America. I only discovered it a few days ago, so the fact that I’m almost done means it’s good. Unlike most people that explain poverty to the middle classes – for instance because they got a book contract to go undercover in low-wage jobs for a couple of months, *cough* Barbara Ehrenreich *cough* – Tirado’s been legitimately poor. (The only reason she’s not still poor is because she got paid to write this book after a freak incident where a post she’d written on the internet went viral and was picked up my major newspapers.) She gets into the psychological and physical effects of poverty in a way I’ve never seen before.

What the book really is, overall, is a reminder that poor people are actually human beings, and an elaboration of what that means. It shouldn’t be needed. We shouldn’t need a book to say, “Hey, guess what, we may not have a savings account but we still have pride and dignity and emotions and values, we have the right to have relationships and families and to pursue happiness in whatever little ways are available to us.” But we do need that book.

Because in many Americans’ minds, when you need any kind of government support (never mind how many jobs you’re working), you are suddenly reduced to a subhuman parasite on society and everything you do to survive and get through your day is an irresponsible waste of other people’s money. For instance:

You used food stamps to buy junky frozen food because it’s cheap and satisfying and you’re trying to stretch that money? You’re a horrible person. The rest of us will have to pay for your ER bills when you develop diabetes.

You used food stamps to buy organic strawberries because you’re concerned about pesticides? You’re a horrible person. How dare you waste taxpayer money on such luxuries as uncontaminated food.

You bought a toy for your child? You’re a horrible person. Don’t you know that your child should be wearing rags and begging joylessly for scraps of rotten food outside Trump’s hotel? Why are you even breeding anyway?

You have an iPhone? You’re a horrible person. I don’t care how you got it, or if it’s the only technological device you have (doubling as phone and computer), or what you use it for (staying awake during the slow parts of your 14 hour night shifts at a group home, for example); the fact that you own this one item is proof that you’re using taxpayer money to live in the lap of luxury. You probably live in a mansion and buy brand-name clothes directly from the designers and do heroin.

(But when rich people actually do all that stuff with their corporate tax breaks, it’s totally OK. For some reason, a multi-billionaire’s yacht is a better use of tax money than our heating bills or our kids’ lunches.)

When you’re low income, you’re made to feel your supposed lack of worth in a hundred ways, from your employer’s expectation that you’ll be available every minute of every day for your part-time job that doesn’t pay the bills and has zero benefits (in other words, your time is worth nothing), to the demand that you smile and be cheerful all the time in the face of verbal abuse from customers and supervisors (in other words, your emotions are worth nothing), to the lack of bathroom breaks at many low-wage jobs, or requirement to ask permission (in other words, your basic comfort and privacy is worth nothing), to the insistence that, while dealing with all of this day in and day out, you feel properly embarrassed for taking whatever help you need to feed your family.

At one of the group homes where I worked, the director decided to save money by making employees bring their own toilet paper. Well, some of the residents used toilet paper, too, so that meant we were supposed to use our part-time minimum wage money to provide toilet paper for ourselves and for the residents. Mind you, nobody bothered to tell us this ahead of time. I just showed up to work one day and discovered, when I needed to pee, that there was no toilet paper in the house. (Or paper towels.) I called my supervisor and was told I needed to provide my own. I pointed out that I was alone with three medically fragile residents in wheelchairs, so I couldn’t leave; someone would have to bring me toilet paper. My supervisor told me he would bring it himself after he was done with his meeting and all his other work. It would only be a few hours. No big deal when your bladder’s about to explode, right?

Fortunately, I was able to get my husband to bring me a roll of toilet paper on his way to work. If our schedules had been different, or if I’d waited another ten minutes, that wouldn’t have been an option.

Another time, at a different company, a supervisor reprimanded me for eating lunch on my shift. It was a 12 hour shift with no breaks, and I was pregnant.

When you work in these kinds of jobs, there are dozens of these little humiliations. Coming from a middle class background, I was shocked at how I and my coworkers were treated. My coworkers weren’t shocked, just pissed off.

Anyway, this is my personal spin-off rant on some of the subjects that Tirado addresses more coherently and with more depth. I particularly groaned over the incident where she had to pay back SNAP benefits because of a government error that she had repeatedly called the state about (this happened to me, too, with slightly different details). She discusses exhaustion, depression, the sense of never catching up. And she’s good at illustrating just exactly why it’s not possible (or even rational) to be responsible and plan ahead with money when you don’t have enough for the basics.

On the other hand, I will just note that I can’t really relate to what she says about having children. It’s not that I disagree with her in principle, but my experience parenting a child with multiple medical and developmental issues is very, very different from Tirado’s experience raising her typical children. But that’s because my parenting experience is very different from most people’s. She’s also much more accepting of capitalism than I am, although the mutual class resentment that’s on full display in her book seems to me like a pretty good argument for something else.

I’ll just end this with a passage from Tirado’s book that I found particularly poignant. No comment; it speaks for itself. A lot of free-market religious conservatives could stand to read it a few times and pray about it.

“Living in low-income neighborhoods, I’ve seen sexual health campaigns aimed at slut-shaming us into celibacy. They talk about things like self-esteem and value and all the usual abstinence arguments. They assume that our bodies are a gift that we should bestow selectively on others, rather than the one thing that can never be anything but our own. […]

These are the bodies that hold the brains we’re supposed to shut off all day at work, the same bodies that aren’t important enough to heal. These are the bodies that come with the genitalia that we should be so protective of? I really don’t understand the logic.

You can’t tell us that our brains and labor and emotions are worth next to nothing and then expect us to get all full of intrinsic worth when it comes to our genitals. Either we’re cheap or we’re not.

Make up your fucking mind.”

–Hand to Mouth: Living in Bootstrap America

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