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.

 

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Neurodiversity’s gatekeepers

I read this yesterday, and I want to link it here because it’s so good and so important: Dr. Simon Baron-Cohen Does Not Understand the Neurodiversity Paradigm

Here’s a quote from the article:

“The Neurodiversity Paradigm says that all brains are good brains and no one is disordered or in need of a cure or treatments that work to the detriment of their personhood.” – Max Sparrow

I passionately agree with this interpretation of the neurodiversity paradigm. Unfortunately, Dr. Baron-Cohen is not the only one who espouses the view that if a condition affects one’s functioning beyond a certain point (defined by whom?), it is no longer a “difference” or part of the person’s identity, but a “disorder” to be cured by any means. I hope that the people who see it this way are in a minority, but I don’t know that they are.

Here’s another example of this type of thinking:

“Autism is a natural form of human neurodiversity. Labeling it as a “mental disorder” or a “disease” has no scientific basis, has no benefit for Autistic people or their families, and leads inevitably to stigmatization, shame, and marginalization. Blind people, Deaf people, and many other disabled people get the services and accommodations they need without being labeled as having mental disorders. We don’t have to call autism a disorder or a disease to acknowledge that Autistic people are disabled and can require accommodations. Stop worrying about the latest changes to the DSM’s diagnostic criteria, and just remove autism from the DSM entirely, just like homosexuality was rightly removed years ago.” – Nick Walker (emphasis added)

Ohhh, OK, I get it. Having autism is fine, because it’s not a mental disorder. Better take it out of the DSM so that the stigma from all those mentally disordered people doesn’t rub off on us! And if an autistic person has a comorbid mental illness, we’ll just stigmatize them for that, not for the autism.

To sum it up another way:

Blind = “Hey can you teach me to read Braille?”

Deaf = “I really admire your culture!”

Physically disabled = “Thanks for the curb cuts!”

Autism = “Natural form of human neurodiversity.”

Mentally ill = “AHHHHH HELP THERE’S A CRAZY PERSON SHARING A DIAGNOSTIC MANUAL WITH ME GET ME OUT OF HERE!!!!!!”

I think of people who think this way as Neurodiversity Snobs. They are the self-appointed gatekeepers of the neurodiversity movement. They stand at the gate, checking everyone’s credentials:

“Ah, I see you have a job and you’re married? Quirky but brilliant? Go right in.”

“Wait a minute, wait … this says you’re psychotic and frequently homeless? I’m sorry but you can’t go in. You make a bad impression and … you’re just not really our type.”

“Hi there. Looks like those accommodations in college really worked for you! Well, go in, they’re just serving the cocktails.”

“You’re intellectually disabled? Um … I’m not sure what happened but they shouldn’t have sent you here. That was a mistake. Yeah, just head over there to the Eugenics Division, they should help you out.”

Fuck that. Seriously, fuck it.

I reject any articulation of the neurodiversity paradigm that excludes certain people because they don’t have the “right kind” of neurodivergence.

Sanesplaining

I got into an argument with a stranger the other day on a mutual friend’s Facebook page. It started as a debate over the role of mental illness in the Las Vegas shooting and very quickly became a discussion of whether I was qualified to have an opinion on the matter. My opponent, a white male psychology student, told me “You don’t understand mental health.”

Well, maybe that’s true. Maybe I don’t understand mental health. But I think I have a decent understanding of mental illness – primarily the depressive-bipolar-schizophrenic variety and PTSD – from having lived with it for most of my life and having lots of contact with people who live with it, treated and untreated. Of course I am always learning more and there is much that scientists don’t understand either; and my knowledge and understanding of things like substance abuse, personality disorders (including antisocial personality disorder), is more limited.

There is no evidence that Stephen Paddock was mentally ill or that “counseling” would have prevented what he did, had he been motivated to seek it out (certainly money was not a barrier for him). He carefully and deliberately planned the massacre over a long period of time in a way that somebody with the cognitive impairments often accompanying psychiatric illness would be unable to do. His preparations included modifying legally purchased rifles to function as automatic weapons and installing surveillance cameras outside his hotel room.

I hold the unpopular opinion that some people simply enjoy hurting others and are basically bad people. You can label that a mental illness if you want, but these people are often very clever, very manipulative, good at hiding at their crimes and appearing charming. They have no functional impairment or apparent distress due to their actions. Very sadly, I have some personal experience with this, too. What do we call these people? What do we call the child pornographers and the serial killers?

That’s the discussion we could have had – the psychology major and I. But the discussion we ended up having, centered on me and how ignorant I am. He picked at my use of words; he was passive-aggressive and condescending. As it happens, I have not been terribly stable lately, and I snapped.

No doubt, the strong and colorful language that I ended up using, completely discredited everything I’d said. But I was discredited in his mind long before then. Why? Probably because I’m female and not a psych student and I disagreed with him. Disclosing that I’m crazy (and using the word “crazy”) didn’t help my case.

What upset me, and left me in a fragile and agitated state for the rest of the day, was not that someone disagreed with me. I actually enjoy debate. It was the way he picked apart everything I said. It was the implicit sneer in his comments. I hate to think that this person may become a therapist. I hate to think that people will go to him for help and that he will impose his preconceived ideas on their realities, then pick at them and condescend to them when they object. We don’t need any more therapists like that. That’s the last thing we need.

Navigating the world with a brain that filters and connects things unpredictably, that turns on you at odd moments, is scary. Depending on how much insight we have into our condition, it can make for a lot of self-doubt and self-questioning. “Are my perceptions here correct? Is this real? Will I look back on this later and realize my thinking was totally distorted? Or am I right this time? I’ve turned out to be right before.” Having a couple of trusted individuals whom one can consult in these instances of doubt is very helpful. But this dependence on others to confirm or dispute our interpretations of our own experiences makes us very susceptible to gaslighting, and to what I’m going to call sanesplaining.

Sanesplaining is when someone who does NOT have a major psychiatric condition themselves, tells someone who does what their condition is “really” like, what they experience or should experience, how they feel or should feel. It also involves discrediting and disputing the person’s thoughts and opinions. I’m going to use an example here from one of my favorite movies, Benny and Joon.

Joon is a highly intelligent young woman with an unspecified mental illness (mostly resembling schizophrenia). She is cared for by her older brother Benny. After Benny finds out that Joon has begun a sexual relationship with their roommate, Sam (who’s also neurodivergent, with a learning disability and some autistic traits), Benny goes into a rage and throws Sam out of the house. At this point, Joon tells Benny, with strong feeling and conviction, “I love him!”

“Yeah?” says Benny. “Well you are crazy.”

There you have it. Sanesplaining in a nutshell.

Our feelings and thoughts are constantly in question. It’s not always that overt. It might be a family member asking “Did you take your meds?” when we’re trying to explain why we’re upset about something they’ve done. It might be a psychiatrist saying “No, that’s not a side effect of this medication”. (Hint: if your psychiatrist says this, FIND A NEW ONE.) Or it might be some douchey psychology major on the internet, saying “You used a clinically imprecise term, therefore your opinion is worthless. Your lived experience doesn’t matter.”

Functioning labels for mental illness?

I don’t know if this is a recent development or if I’ve only recently noticed it, but for the past year or so I’ve been seeing lots of articles using the terms “high-functioning” and “low-functioning” to talk about psychiatric conditions like depression. Apparently, using them for autism wasn’t bad enough. The autistic community has addressed, many times, the problems with these terms in the context of autism; I want to discuss them in the context of mental illness.

Many of the points to be made are the same as for autism. We all function differently at different times and in different circumstances. The resources available to us – which include money, supportive family, good quality therapists – can make a tremendous difference. A person can have multiple mild comorbids that, together, severely impact functioning, which makes terms like “high functioning depression/autism” linguistically imprecise and misleading. (I don’t have a problem with severity labels. While functioning labels describe the person, severity labels describe the condition. Important difference.) Finally, dividing people into “high” and “low” diminishes the challenges faced by one group and the autonomy of the other, and tends to create division rather than alliance.

There is one big difference from the discussion surrounding autism: mental illness can be medicated. Not always successfully – and medications bring their own problems. But it introduces yet another variable.

One person might be “high-functioning” on medication and “low-functioning” without it. Someone else might be “low-functioning” on medication because of treatment-resistant symptoms. Another person might be “low-functioning” without medication but unable to take medication because they previously developed Neuroleptic Malignant Syndrome, or unwilling to take it for various reasons. And yet another person may be “high-functioning” without medication and choose not to take it, even though it could potentially resolve their symptoms, either because of previous side effects or they just don’t like the idea, etc.

Personally, I function pretty well ON medication … when it’s working. By functioning pretty well I mean I get the necessary things done. My son gets his medicines and his food and his diapers changed, and he gets to school and therapy and medical appointments. Those are the most important things, so I make sure they happen. I make myself acceptable-looking in public even if I haven’t showered in a couple of days. Things like cooking, cleaning, talking to people, those often take a back seat when my mood dips. I don’t always have the energy to brush my teeth, or to walk across the room for something that isn’t an emergency. I do my best though and I have enough good days to make up for what I’ve let slide on the bad days.

Again, this is ON medication. I am also aware that my current medication regimen won’t work indefinitely.

I’ve read too many articles where people who identify themselves as “high-functioning” anxious/depressives don’t even address whether or not they take medication, or why/why not. But if we’re going to talk about functioning, medication matters, because one of the primary purposes of medication is to restore/increase a person’s ability to function in society. It matters, regardless of how you feel about medication. It has profound implications for society, for how we think and talk about human value, work, autonomy, responsibility.

 

Catching octopuses, or, my love-hate relationship with the DSM

When I was in my teens and early 20s, both during the period when I read the DSM like a Bible of self-knowledge and during the anti-psychiatric period where I rejected the DSM altogether, I took it for granted that the diagnostic categories in the DSM reflected actually distinct disorders. I know now that the correspondence is much more complicated.

Here’s a metaphor. A mental disorder is like an octopus. It has eight tentacles, wiggles around, squishes to get through tubes, and changes color. The diagnoses in the DSM are like little cardboard boxes. Now imagine that an octopus is falling through the air (don’t ask me why, it just is) and you’re trying to catch it in a relatively small cardboard box. As it falls, the octopus keeps changing shape and color, and when you finally catch it, three tentacles are sprawled over the edges of the box. Oh well, at least you got most of it, right? I mean, until it crawls out.

That’s basically what psychiatrists are doing when they diagnose: trying to catch an octopus in a box. The actual condition, this complex reality that starts in our brains and is intertwined, whether we like it or not, with our personalities and experiences and interpretations of the world, is too big and shifty and multi-tentacled to fit neatly into a box. Sometimes though, diagnosticians can catch most of it, treat accordingly, and it all makes sense for a while … until the octopus moves. Which it will eventually do, because it’s a living thing.

For those of you who have no idea what the hell I’m talking about, let me be more concrete.  It’s not uncommon for a diagnosis of major depressive disorder (MDD) to change to bipolar II when hypomania emerges among the recurring depressions; for bipolar II to change to bipolar I when the person has their first full manic episode; or even for bipolar I to change to schizoaffective disorder when hallucinations persist outside of manic and depressed episodes. I’ve personally observed these progressions in my own family. Was the initial diagnosis wrong? Not really; the symptoms changed, the presentation developed.

Furthermore, I know a lot of people (most notably myself!) who have outlying symptoms, symptoms that don’t quite fit the diagnosis that seems most appropriate for them. A good example of this is someone with a bipolar II diagnosis who’s had one full-blown manic episode in 50 years. Does that one episode make her bipolar I? The flavor of her disorder is definitely more depression/hypomania. The people I know who have schizoaffective disorder probably fit their diagnosis the best, but schizoaffective disorder is a controversial diagnosis that some psychiatrists want to get rid of, so that just kind of proves my point.

Lately I’ve come to believe that there’s a multidimensional spectrum of psychotic/affective disorders, similar to the (also very complex and multidimensional) autism spectrum.*** And where you are on the spectrum can shift over time, in more than one direction.

Refreshingly, I am not the only person to think this way. There’s even actual scientific evidence for it. The “Kraepelinian Dichotomy,” which made a hard distinction between mood disorders and schizophrenia, is being called into question. (I’ll post some links below for those who want to dig deeper but are too clinically depressed to google.) Let me just state here that in one study, 45% of patients with psychotic disorders did not fit a diagnosis of bipolar or schizophrenia, but had elements of both. That’s almost half.

Here’s a little graph to illustrate how I kind of envision the spectrum:

mood spectrum (2)

 

The Y axis is mood, ranging through shades of depression, hypomania and mania. The X axis is psychosis, ranging from no psychotic symptoms through fluctuating paranoid delusions to round-the-clock hallucinations with anosognosia. Then there’s the Z axis coming out towards you, a third dimension, for anxiety.

You will notice that I took a shocking liberty and put “negative symptoms” (of schizophrenia) on the mood axis, although schizophrenia is not supposed to have a mood component. Well, I may be wrong, but do a google search and you’ll find articles in medical journals trying to figure out what the difference is between negative symptoms and depression. There must be a difference, because the Kraepelinian Dichotomy says these are totally distinct disorders, right? And then you will find stupid answers being proposed such as that depression is different because depressed people feel “sad” and schizophrenic people don’t.

Sorry to break it to you but I don’t feel sad every time I’m depressed, nor is sadness required for a major depressive episode in the DSM. Often as not, I just feel sort of bored and disgusted with everything (anhedonia), and like I’m moving through molasses (psychomotor retardation). My body aches, my brain feels slow and stuffed with cotton, everything takes more physical and mental effort. My speech slows down and I have flattened affect. These are all considered mood symptoms in my case because I’m diagnosed with a mood disorder. However a schizophrenic person could have the same symptoms, and their anhedonia, psychomotor retardation and flat affect would not be considered mood related. So are they really inherently mood symptoms, or do they only look that way in a certain context? And what about psychosis – if I become psychotic during a depressive episode, does that mean psychosis is a mood symptom?

Anyway. Back to the graph.

Coordinates represent a point in time. A person might cycle between two or more sets of coordinates, or move steadily in one direction across the graph. Over the course of a lifetime, some people will have a dot here or there (an isolated episode of psychosis, for instance, or postpartum depression) while others of us will have a big old winding road-map of places our brains have been.

It’s OK to come up with official names (diagnoses) for the most common patterns on these road-maps, as long as we don’t let them limit and distort our perceptions of them. Diagnostic labels are useful mainly for medical professionals and researchers; understanding the particular dimensions and coordinates of one’s own condition is much more useful and empowering to those of us actually living with it.

 

Further reading:

With his book “Why am I still depressed?”, Dr. Phelps helped me begin to reconceptualize my own recurrent depression as a form of bipolarity. Since I have double depression (probably the reason I don’t experience clear hypomania very often), the chart on this page made a particular impression on me:  http://psycheducation.org/diagnosis/bipolar-diagnosis-spectrum-or-yesno/

I totally geeked out over this article. This is the source for the 45% statistic and the whole thing is just super interesting:  A dimensional approach to the psychosis spectrum between bipolar disorder and schizophrenia: The Schizo-Bipolar Scale

This scientific editorial concludes: “Moving to a spectrum concept (be it with categories or dimensions) with recognition of overlapping pathogenetic factors and varying expression (dependent upon both genetic risk and environmental exposure) would allow a confident and clear diagnosis to be offered (perhaps ‘psychosis-spectrum illness’ or ‘ mood–reality disorder’), with a clear explanation that some specific tests and a period of observation will help to clarify the likely course of illness and response to treatment. This would be greatly preferable to the current situation and the inevitable consequences of damage to the therapeutic alliance caused by diagnostic revisions.” If you agree with me that that quote was awesome, and are now meditating on the implications of a term like “mood-reality disorder” (but what is reality??? feeling philosophical now), you’ll enjoy the whole thing: The beginning of the end for the Kraepelinian dichotomy

***Random footnote: I’d like to see a graph with the same concept for the Autism Spectrum, with dimensions including social and sensory components and whatever else autistic people jointly decide is most important.

“Least restrictive”? Disabled spaces and reverse inclusion

This post is not about parking spaces (sorry to disappoint). It’s about education, and also adult social life.

Under IDEA, mainstreaming of disabled students in regular education classrooms is seen as the goal of special education. As much as possible, students are to be educated in the Least Restrictive Environment. (The least restrictive is a general education classroom, followed by a mixed or inclusion classroom, followed by a “self-contained” classroom in which all the students are disabled.) Similarly, organizations that work with disabled adults at least pay lip service to the notion of including them in community life as much as possible.

Regardless of practical shortcomings, the goal of inclusion is obviously a HUGE step forward from where we were only decades ago, when disabled people were placed in crappy institutions, often denied an education, and in other ways automatically segregated from mainstream life. And the risk of going back to that is frighteningly real. There is plenty of push-back right now from people who would like to see disabled students out of regular classrooms (for example this Alabama board of education member or our current attorney general); and cuts to Medicaid services like home nursing, which allow disabled people to live at home and in their communities, could potentially force many into institutions.

So before I go further, let’s get one thing straight: Inclusion in one’s nondisabled communities is a human and civil right for disabled people of all ages. PERIOD.

Now that that’s clear … I have some problems with inclusion as it’s currently conceptualized.

First of all, I don’t think the language of “restrictiveness” is a helpful or accurate way of looking at different educational placements. I understand where it came from historically, but I think we can do better. Instead of talking about a classroom of disabled students as a place where they are restricted or restrained, why not speak of it in terms of support and environmental modification?

The preschool Monkey attends is described on the district website as “the most restrictive” option for his age group. That’s because the majority of students who attend have IEPs. In Monkey’s class, there are slightly more kids with IEPs than typical peers. All the students are taught by a special education teacher and aide.

I really have no idea what is “restrictive” about any of this. Class size is smaller than the equivalent Head Start classrooms, meaning it’s quieter and the kids get more one-on-one attention. The school facility is quite nice, with big outdoor and indoor play areas and lots of fun sensory toys. There’s a full-time nurse just down the hall with his medications on hand, and individual and group therapies taking place in the classroom or OT/PT gym. I don’t see any of this as restricting Monkey’s freedom or ability, but the opposite: it’s supporting those things. (He loves it, by the way.) So why don’t we call it “the most supportive environment” or “the most accommodating environment”? Does that not sound negative enough?

I’m not advocating for euphemisms here. I’m just wondering how, for example, self-contained classrooms might look different if we conceptualized them in terms of “most accommodating” instead of “most restrictive”. Providing the necessary amount of accommodation for an individual student – not restricting them in some way – is what a self-contained classroom should be for. It should be for students whose needs can’t be accommodated in regular classrooms. If a student can function and learn with accommodations in a regular classroom, then they should do that. They should learn in “the least accommodating environment”! Hahahaha. (Seriously, though, I went through mainstream public school and “least accommodating environment” is a pretty good way of describing it.)

Recently, I took Monkey to the “sensory-friendly” time at a children’s museum. He enjoyed it and I did as well. There weren’t many people, they did something to the lighting to make it less annoying and there were little soothing “sensory break rooms” you could creep off to. Monkey was able to borrow noise-reducing headphones, which helped with all the white noise from the exhibits and from people walking and talking in echoey hallways. (I seriously considered borrowing a pair myself. Next time.) And all the other families had autistic members or a related disability, so we didn’t get any weird looks or feel out of place at all. It was awesome.

(But maybe I should say “restrictive” instead of “awesome”? I mean, the whole environment was modified to accommodate disabled people and the people there were either disabled or supporting a disabled person, so really … restrictive.)

What I’m trying to get at is that there are often ableist assumptions in the way we talk about inclusion. Aside from the “restrictive” language, a situation can be created where a person thinks “Hurray! I’m almost normal. I get to be with normal people.” I suspect this is especially an issue when the disability is developmental, intellectual or psychiatric, as opposed to a physical disability. If you hang out with developmentally disabled people, you can see this internalized ableism in the way they compare themselves to other, “more disabled” people in their own class or group home or community center. The hierarchy of “less disabled”/”more normal”=better is imported into the disabled community.

But if we’re not allowed to have a disabled community, a positive disabled identity, then we’re stuck with – at best – the almost belonging of being the not-too-disabled person in a room full of typical people. Which is why, while exposure to and interaction with nondisabled peers is important (after all, there are more of them, and they’re always going to be around, and some of them are even pretty cool), I think we should also encourage the formation of disabled groups and spaces, where disabled children can feel a sense of safety, pride, ownership and unequivocal belonging, where they are not the odd ones out. Ideally this would include teens and adults with disabilities, as well as younger children. And then, once this space and this community is established, there is the potential for reverse inclusion: bringing nondisabled/neurotypical peers into the disabled setting.

I’ve been in reverse inclusion settings, where I’ve been in the “normal” minority. I toured a living history museum with a group of students from the local Deaf school. I’ve been to a dance that was for adults with Down Syndrome, cerebral palsy and related disabilities (most fun dance I’ve ever been to) and other similar events. In high school I sometimes would hang out with a friend of mine and her boyfriend who were both intellectually disabled; that was an informal instance of reverse inclusion. Let me tell you: your mindset shifts when you’re the minority; when you’re not the one including them, rather they are including you.

Imagine this: what if parents wanted their typical children to get a spot in their neighborhood school’s autism classroom because it was just so great? “It’s small, the teacher’s wonderfully patient, the students all get individual attention, they have lots of hands-on learning. Oh and you should see all the cool OT equipment! I sure hope Maria gets into the reverse inclusion program!” Wouldn’t that change the way we all think about special education and disability?

I have more thoughts on this subject but I’d better stop for now. I’ll end with a quote from Ian Brown’s beautiful book The Boy in the Moon. Brown’s son, Walker, had CFC with very significant intellectual disability. The first half (roughly) of the book is memoir. The second half is really a philosophical exploration of disability, especially developmental and intellectual disability. In his attempt to understand Walker and to get inside his world, as well as to find the best residential placement for him, Brown went to France to stay in a community for disabled people called L’Arche. He also visited a similar community in Canada. Towards the end of the book, he writes:

“These days, I have a fantasy of my own. In my fantasy, Walker and people like him live in a L’Arche-like community with the help of assistants. It’s a beautiful place, in a beautiful spot, with a view of the sea of the mountains, because for once, in this place, it isn’t just those who can afford them who have access to the best views, but people who might need beauty even more, because they live with so much less. In my fantasy, this village is owned and inhabited by the disabled, on their schedule, at their pace, according to their standards of what is successful […]. In my fantasy, it is the rest of us, the normals, who have to be ‘integrated’ into their society, who have to adapt to their pace and their place.” (271)

I share that fantasy.

The opioid crisis scares me – but not for the reasons you think.

I’m very concerned about the rhetoric I’ve been hearing around the opioid crisis.

People who use opioids for chronic pain have been talking, for a while already, about doctors suddenly cutting their dose, dropping them as patients, or subjecting them to questioning every time they need a prescription refilled, due to the new guidelines and restrictions. As the opioid crisis is proclaimed to be a national emergency, people who live with disabling pain are being stigmatized as addicts and drug-seekers, even by the medical establishment on which they depend.

While there are some valid questions about whether opioids are the best way to treat chronic pain, this is absolutely the worst way to address that issue. Better ways would include improving access to medical marijuana and to therapies like acupuncture and biofeedback that are proven to reduce some types of chronic pain. But even if we were to do those things, there would still be some people who need opioids, and they shouldn’t be shamed for that.

But it’s not just about chronic pain. It’s also about acute pain – particularly acute pain in people with mental disorders and/or histories of psychiatric care. Like me.

When I read or hear things about doctors prescribing “a week’s or month’s worth” of Percocet after a major operation when a few days’ worth “should” have been “enough” – I think of the aftermath of my c-section. I had a particularly nasty type of c-section after a prolonged and painful labor. I was prescribed two weeks’ worth of Percocet, and I took every precious pill. And I needed every one.

I was also on high-dose ibuprofen, but the Percocet was what made the difference between functioning and not functioning. The Percocet meant I could get in and out of bed, with help, without fainting from pain. The Percocet meant I could walk without feeling like my abdomen was starting to tear open. The Percocet meant I could take a shower without ending up in a sobbing huddle on the floor (although I was still close to that at times). And it meant that I could visit my newborn son in the NICU, hold him, and pump milk for him.

 

I did not become addicted to Percocet. But according to articles like this one, I was highly at risk of doing so, because I have a longstanding mood disorder and I had severe postpartum depression after my c-section.

Furthermore, I currently take a benzodiazepine (low dose, PRN) for acute anxiety, and combining opioids with benzodiazepines increases the likelihood of an overdose.

All of which makes me wonder. In the future – as reaction to the opioid crisis intensifies – if I were to have a serious accident, or another major surgery, would I be denied an opioid medication, because of my history of depression? Would I be under-medicated for pain, because of my responsible use of a prescribed anxiety medication?

I am NOT suggesting that it’s not a good idea to label things or to warn patients about the danger of using both drugs at the same time. Awareness is good. Increased availability and quality of mental health treatment would also be good, not just for people who are already addicted, but for those who are at risk of self-medicating with pain medications because their insurance won’t cover a decent psychiatrist.

You know what else would be good? An economy that doesn’t constantly punish people by making them work longer hours for less pay and less benefits while their living expenses steadily increase, only to see their jobs one day disappear.

A caller brought up the economic aspect of the problem on an NPR program I heard last week. Bertha Madras, one of the five members of Trump’s commission on the opioid crisis, responded that the solution to difficult conditions is to work harder (because that worked for her), and that we have to change “a culture that normalizes chemical coping”.

Which, to me, sounds like a call for more stigma. Let’s stigmatize the poor so that they work harder. Let’s stigmatize addiction more. And how do you deliberately stigmatize “chemical coping” without worsening stigma for people who take psychiatric medicines, especially ones with addictive potential?

What I fear is a world in which a postpartum woman can’t hold her newborn because of poorly controlled pain, and is stigmatized as a drug-seeker when she asks for something more effective, because she has a psychiatric history. And I wish someone would talk about that.