Blargh

I have things to say, I just can’t access them past all the rage. So, all I can really say is that with regard to myself, my son, and various other people that I love – I feel that our right to exist, to live, our worth as human beings is under attack by the government right now.

Shocker? Maybe, maybe not. I’ve just never felt it so keenly. I guess that says something about my own privilege.

Circles

Parents of children with disabilities/special needs/whatever will often relate their experience to the well-known five stages of grief. Personally, I don’t find that these stages express my own experience well. I’ve never gone through denial or bargaining with regard to Monkey’s challenges. As for the other three – anger, depression, and acceptance – I go through all of those, but not in any kind of orderly sequence. They are all sort of jumbled up together. One will predominate for a while, then another for a while, and they move in circles, overlapping, mingling.

I don’t grieve for “the child I expected to have” or “the parent I thought I would be” or any of those things that people often mention. I’m not neurotypical, I never expected to have a neurotypical child, and if anything I’m probably a better parent than I thought I would be (I had low expectations). Monkey is so much awesomer than any child I could possibly have conjured up in my imagination. In my darkest moments I don’t wish for a different child.

No, what I wish for is a different world.

It’s the world that I grieve over. Sometimes – often – Monkey is the catalyst for that grief.

For instance, while we were on vacation, we took Monkey to the park. There was a little boy there who was the same age as him – their birthdays were a week apart. The boy was zipping around on a little scooter thing; he offered Monkey a turn. Monkey tried, but couldn’t figure it out. The boy kept talking, and Monkey couldn’t keep up with him verbally. Then the boy started literally riding in circles around Monkey, who stood in the middle, bewildered, still, uncertain.

I grieved over this incident for the rest of the day. It was just too perfectly symbolic of what I see so often, and what I know will often happen in Monkey’s life – that others will run circles around him.

I had a two hour meeting with therapists and school officials earlier this week in which we all talked about all the things he isn’t doing, all the things he struggles with and needs. He will be in a special needs preschool classroom. He will get physical therapy, occupational therapy, speech therapy. He is behind his peers. He is developmentally delayed.

But that’s not how I see it. That is, I see the difference from his peers, and I see his struggles, but I don’t see those things in light of the value judgments that the world makes. I grieve because the world values people who are FAST, and people who are STRONG. People who are loud and flashy and attractive, who know how to lie and manipulate others. Those who can run circles. Meanwhile, the world overlooks, or disdains, those who are standing in the middle of the circle – quiet, thoughtful, slow, observant – the center, the gravity that makes the orbit.

Things that go bump in the night (weighted lap pads, health care bills)

Well, I’m back. Back from a refreshing, wonderful, not-long-enough vacation to – whatever this is. “Real life”?

Monkey did much better on this trip than the last one we took (which involved self-injurious meltdowns, regression and dehydration). This time, we were prepared. We brought a binder full of visual supports, headphones, an iPad with his favorite games and videos, fidgets, a weighted lap pad with farm animals on it.

The lap pad was very calming for him on the plane. Unfortunately, it had the opposite effect on the TSA agents. On our flight out, they searched my carry on, questioned me about it and then tested the lap pad for explosives. On our flight back, I removed it from the carry on before sending it through the scanner. They still questioned me and tested it for explosives. (Behold the terrifying object: Find Me Lap Pads) Despite the hassle, I will definitely bring it the next time we fly, because aside from lowering his stress level, it’s the ONLY thing that keeps Monkey from continually kicking the seat of the person in front of him.

I tried hard to avoid thinking about Monkey’s doctor’s appointments, therapies, etc, while on my vacation. However, I have been following the progress of the AHCA in the Senate and have been continuing my healthcare advocacy on and offline, contacting legislators, speaking with human rights organizations. I saw the footage of protestors being dragged out of their wheelchairs and carried away by police. That’s our future if we don’t fight back – except that, eventually, the cameras won’t be there. So, once again …

CALL YOUR SENATORS! Especially if they are Republicans. Tell them to vote NO on the AHCA.

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