This is my first post for BADD this year — Blogging Against Disablism Day. Hopefully there will be others to follow.
So these days, in the USA and many other countries, different categories of disabled adults get different services that are supposed to help us live outside of institutions. One kind of services is developmental disability services. Another is physical disability services. Another is psychiatric disability services. Since the differences often have more to do with accidents of history, who gets to classify what groups of people, and so on, I’m not going to try to explain the differences here. I’m also going to use a lot of medical language, because if I try to describe things as they are, I’ll get bogged down in language and never finish the post. So please don’t take this post as agreement with the conceptions of disability laid down by service systems and professionals. I’m just using their ideas for convenience. As well, I’m speaking in generalizations. Of course there are exceptions on all sides of this. It’s just striking how consistently psychiatric services work a certain way, when other services either don’t work that way at all, or vary in how they work. Psychiatric services stand out as particularly bad in this regard.
If you get DD or physical disability services, there’s a pretty good chance that a large part of your services will involve either helping you do things you can’t do (or can’t do without creating serious problems for yourself), helping you learn how to do things you can’t yet do but are within your grasp for learning, or some combination of the two.
A lot of times these tasks are broken down into ADLs (Activities of Daily Living) and IADLs (Instrumental Activities of Daily Living). Here’s an example of how such things are often broken down:
ADLs: Bathing, Dressing, Grooming, Mouth care, Toileting, Transferring Bed/Chair, Walking, Climbing stairs, Eating.
IADLs: Shopping, Cooking, Managing medications, Using the phone and looking up numbers, Doing housework, Doing housework, Doing laundry, Driving or using public transportation, Using finances.
These definitions were taken from the Senior Planning Services website, in a PDF file titled ADL / IADL Checklist. That’s just one definition. Other lists might be longer, or shorter, or more descriptive than this one. But it gets the idea across.
The Oregon Department of Human Services published a document that describes common ways how a person with a developmental disability might be supported in accomplishing ADLs and IADLs:
Assistance with ADLs, IADLs, and health-related tasks may include cueing, monitoring, reassurance, redirection, set-up, hands- on, or standby assistance. Assistance may be provided through human assistance or the use of electronic devices or other assistive devices. Assistance may also require verbal reminding to complete IADL tasks.
(A) “Cueing” means giving verbal, audio, or visual clues during an activity to help an individual complete the activity without hands-on assistance.
(B) “Hands-on” means a provider physically performs all or parts of an activity because an individual is unable to do so.
(C) “Monitoring” means a provider observes an individual to determine if assistance is needed.
(D) “Reassurance” means to offer an individual encouragement and support.
(E) “Redirection” means to divert an individual to another more appropriate activity.
(F) “Set-up” means the preparation, cleaning, and maintenance of personal effects, supplies, assistive devices, or equipment so that an individual may perform an activity.
(G) “Stand-by” means a provider is at the side of an individual ready to step in and take over the task if the individual is unable to complete the task independently.
That gives a pretty good overview of how disability services are supposed to work: There are things we can’t do, or can’t do without assistance, or can’t do without being so drained afterwards that more important activities fall by the wayside. Again, there are many other ways that we can be helped, but this gives you a good overview.
Generally, the above is what you’ll see when you’re getting services based in the DD (developmental disability) system, or the physical disability (sometimes just “general disability”, since physical is assumed the default by a lot of people) system: You have trouble doing ADLs, IADLs, or other activities that you need or want to do. So someone either helps you learn to do them, or helps you do them. The kind and amount of assistance may be the same every day, or may vary day to day. But the fact that you’re getting this assistance, does not usually change once you’ve been deemed to need it on a long-term basis.
Not so with psychiatric disability. And here we come to the main point of my post.
Like developmental and physical disabilities, psychiatric disabilities can come with problems that make it difficult to do ordinary daily living activities.
The one that’s most obvious to me, especially through knowing people with serious problems in this area, is something referred to as avolition. Even if you’ve never heard the technical term avolition before, you’re likely to find this description familiar from other areas of life. Here is part of Wikipedia’s description of avolition (bolding mine, for emphasis):
Avolition, as a symptom of various forms of psychopathology, is the decrease in the motivation to initiate and perform self-directed purposeful activities. Such activities that appear to be neglected usually include routine activities, including hobbies, going to work and/or school, andmost notably, engaging in social activities. A person experiencing avolition may stay at home for long periods of time, rather than seeking out work or peer relations.
People with avolition often want to complete certain tasks but lack the ability to initiate behaviours necessary to complete them. Avolition is most commonly seen as a symptom of some other disorder, but might be considered a primary clinical disturbance of itself (or as a coexisting second disorder) related to disorders of diminished motivation. In 2006, avolition was identified as a negative symptom of schizophrenia by the National Institute of Mental Health (NIMH), and have been observed in patients with bipolar disorder as well as resulting from trauma.
Regarding schizophrenia, the American Psychiatric Association reported in 2013 that there currently are “no treatments with proven efficacy forprimary negative symptoms” (such as avolition).
When autistic people experience something that looks nearly identical to avolition, it’s likely that it will be referred to as executive dysfunction, inertia, or catatonia. While people often mistake catatonia for a psychiatric term, it was originally a neurological term. This is reflected in the fact that some forms of movement disorder are described as involving catatonia, where other similar movement disorders are referred to as parkinson-like in nature. In other words, you can have the exact same traits for the exact same reasons, and what medical label gets used will depend entirely on whose territory you’re under: neurology, psychiatry, or developmental disability. The problems may be more identical than you’d imagine.
But that’s not really the point.
The point is what happens when you have problems initiating and completing tasks as a part of the DD or physical disability systems, versus when you have the same or similar problems initiating or completing tasks as a part of the psychiatric system. Because if you’re getting psychiatric services in your own house, I can tell you they’re highly unlikely to look anything near the above quote from the Oregon Department of Human Services.
People getting psych services in their own home don’t tend to have anywhere near as much support as other disabled people do, in getting things done that you can’t do for yourself. You’ll likely be referred for therapy and medications, even though there is no therapy or medication that gets rid of avolition very often at all.
Doing that? Is the equivalent of, if I applied for a Hoyer lift for my myasthenic syndrome, and then instead got a referral to a neurologist and a prescription for some pyridostigmine. Mind you, this is even assuming that therapy and meds are going to work for avolition anywhere near the level that a neurologist’s referral and a pyridostigmine prescription will help someone with myasthenia. But even presuming they are, they’re simply not going to be sufficient to solve all the problems of avolition.
And even if therapy and meds somehow worked in the long term? While the person was waiting to see if the worked, they’d still need services to help them get through the day in the meantime. Avolition can result in a total standstill of daily living skills — not just a failure to socialize, but a failure to eat enough, drink enough, keep a job, any number of things.
And avolition is not the only thing that can affect people in the psychiatric system and their ability to take care of themselves. There’s a kind of inertia that goes with depression — its different from, say, autistic inertia, but has some of the same effects in terms of rendering it difficult to move and do things. (One of the big differences is that the depressive kind of inertia often goes along with feelings like “I’m not worth getting out of bed for” that autistic inertia generally doesn’t have.)
Worse than just leaving its clients in a state of constant neglect, the psychiatric service system often uses the excuse that doing this is for people’s own good. After all, the saying goes, if you just let a crazy person get away with being crazy, they’ll never learn to be responsible adult citizens. Even if over and over there’s proof that leaving people to their own devices only leads to neglect and resulting suffering. But there’s a longstanding belief that psychiatric patients are basically like children who need the firm guiding hand and tough love that only a parent can provide. Yes, this belief is wrong. Yes, it’s disgusting. Yes, it’s responsible for suffering, poverty, homelessness, and death when taken to an extreme. And it often is. Taken to an extreme, that is.
The way I see it, it shouldn’t matter whether your inability to get the housework done is because you’re paralyzed, because you’ve got a chronic illness, because of a cognitive disability, because of terrifying hallucinations, because you’re depressed and feel worthless and drained of all energy, because you’ve got a movement disorder, or any combination of these and other things. If you need the help, you need the help. People shouldn’t be cut off from such help just because, through accidents of both personal and societal history, they happen to get psychiatric services rather than some other kind of disability services. Human beings are interdependent. That’s how every human culture has always worked. It’s time we started acting like it.