“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.

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My autism is not my son’s autism. Or is it?

When I was in college, I became friends with a fellow student who was diagnosed with Asperger’s Syndrome. I started reading about Asperger’s and was struck by how much it sounded like …. me. I’d been searching for years, my whole life really, for some kind of explanation as to why I felt so different from everyone around me, had so much trouble making friends, and was always offending people without understanding what I’d done wrong – and here was the first explanation that really seemed to fit. It also fit with the sensory challenges I’d had all my life, with my intense obsessions, my physical awkwardness and clumsiness, my need for routine, and the various self-soothing behaviors that I now know are forms of “stimming.”

I told my parents and they said “No way.” Then they read some books about Asperger’s, called me back and said, “Never mind, you definitely have it.” They consulted my old psychiatrist, who said something along the lines of “Oh, that explains a lot!” And so I embraced the notion that I was indeed on the spectrum.

Until I got a job working with autistic adults.

These adults were at the other end of the spectrum from me, to the extent that the spectrum has “ends.” (I think of it more as a scatter plot.) All the scariest-sounding behaviors people think of when they think autism, these folks displayed. They needed 24/7 supervision and maximum support. I liked them; I liked working with them. But it put my own challenges in perspective.

And then the DSM V came along and Asperger’s was no more. I continued to think of myself as having some autistic traits, but not really actual autism. I didn’t dare lay claim to the same label that, for my clients, was so encompassing, so disabling. In some ways, I related to them and felt that I understood them. At the same time, there was plenty that I didn’t understand; and my own great privilege in having a husband, a job, and the ability to more or less communicate my thoughts, was very very evident to me.

Then I had a baby. And that baby had all sorts of medical problems and delays. And then my baby grew into a little boy and was diagnosed with autism.

Around that same time, my therapist suggested that I’m also on the spectrum, and I had to confront, again, from a new perspective, just what exactly that means.

Only time will tell the level of support that my son needs long-term, but I know this much: he has challenges that I never had as a child. I was not delayed in speech or self-help skills. I didn’t leave buildings by myself, bolt in front of cars or wander into bodies of water. I was sufficiently aware of my body’s boundaries not to injure myself and others on a regular basis. I didn’t lose skills, become so anxious I’d stop eating or drinking for days, or have insomnia and GI problems that required medical management. On the other hand, my son already at the age of 3 has more language than my adult clients had, and many other skills are incipient or emerging.

Some people, often parents of individuals with severe autism (i.e. those that need maximum support), feel that we need different names for the mild and severe ends of the spectrum. I completely understand where they’re coming from; I feel the same way at times. The problem is all the people, like my son, who are somewhere in between those ends. Not only are they in between the extremes, but they are all over the map in that in-between area. That’s why I think of it more as a scatter plot than a spectrum. And if that’s the case, if there are points all over the map, then where do you draw the dividing line?

I do believe that autism is an umbrella term. There are autisms. Similar behavioral profiles with various etiologies and various degrees of disability. Genetic causes (including some known chromosomal anomalies), environmental causes, combinations of the two. Comorbidity is characteristic of autism, which adds further variation.

Rett Syndrome used to be grouped together with autism spectrum disorders; now it’s understood to be a distinct disorder. That may very well happen with other developmental disabilities that are now grouped under “autism.” But until it does, until we can scientifically sort this stuff out, it seems better that instead of fighting with each other, we use our commonalities as a starting point and try to learn from the huge variety of experiences on what is currently the spectrum.

That goes for both parents and autistic individuals. Autistic adults who need only some minor accommodations to live independently, and who want to dispute that autism is a disability in any but a socially constructed sense, need to pay attention to those who are undeniably disabled by their autism. (None of that “It’s not the autism that’s disabling, it’s the comorbidities.” That’s a cop-out.) And parents of nonverbal autistics need to listen to those at various points on the scatter plot who are able to communicate verbally (not necessarily vocally!), and have their assumptions about their child’s inner life continually challenged. (No, I’m not saying that inside every autistic person is a hidden genius. But there are parts of every person that are unknown to their parents and caregivers. Profoundly disabled people are no exception to that.) Most of us, whether we’re autistic or parents of autistics, are hurting, which makes it hard to be open to others. Even so, let’s try to listen to one another’s experience without discounting it.

It’s OK to make distinctions between severity of symptoms and levels of support needed, as long as we don’t use those distinctions to set up opposing camps. Lines can divide, but they can also connect and become beautifully complex shapes.

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.

‘Atypical’ looks pretty typical

Netflix Instant is basically my cable TV, and they emailed me a trailer for their show that’s being added next week, “Atypical.” It has an autistic main character, which immediately gets my interest because I have an autistic child and I’m working on accepting that I’m autistic (which I’ve sort of known since college but then I was in denial but then my therapist told me for the second time that she thinks I am and then my son got diagnosed, it’s a long story) as well as crazy (which I’ve accepted for years).

So anyway, I watched the trailer. I’m not excited.

Is it just me, or is every single autism story-line on TV exactly the same? Let’s see …

White male? Check.

Needs minimal supports? Check.

Played by non-autistic actor? Check.

Parents having trouble coping? Check.

Show has compulsive need to educate audience about stereotypical traits of autism? Check.

Seriously, folks. IT’S BORING.

Show me a female character who’s autistic. Show me an autistic character from a racial or ethnic minority. Show me an autistic character being raised by a single mom working low wage jobs, or a mom with a history of mental illness (which is statistically common since there’s a genetic link), or for that matter, a mom who’s single and working low wage jobs because she has a history of mental illness. Show me an autistic character who has comorbid conditions – epilepsy, OCD, intellectual disability, Tourette Syndrome, a vision impairment, a hearing impairment, impaired mobility, selective mutism, anything. Show me an autistic character who’s gay or bisexual or asexual or transgender or gender nonconforming. Show me an autistic character who challenges functioning labels. Show me a plot that isn’t all about the character’s social awkwardness.

Somebody needs to do for autism what Margarita with a Straw and Speechless have begun to do, in different ways, for cerebral palsy. It’s not about political correctness; it’s about reflecting reality.

 

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.