Tag Archives: Psychiatric Rehabilitation

R – #AtoZChallenge on Mental Health

Welcome to the #AtoZChallenge on mental health, day 18. Today’s letter is R. Enjoy.

Recovery

Recovery is the patient-led process of learning to live a fulfilling life with or beyond one’s mental illness. It may mean overcoming one’s mental health problems, but recovery is also for people with lifelong mental illness. It is related to rehabilitation, which I’ll discuss below, but recovery is led by patients.

Like I said when discussing experience and jobs, I have participated in a recovery group. In these groups, people discuss different topics related to getting their lives on track. For example, we discuss sources of support, pitfalls in our recovery, our relation with our treatment providers, etc.

Rehabilitation

Rehablitation is the staff-led process of helping patients live a meaningful life with or beyond their mental illness. Rehabilitation has the patients’ wishes in mind but still is led by staff. It is a common belief, and I’m not entirely sure whether this is correct or not, tht rehabilitation is linked to resocialization, which I’ll discuss hereafter. As such, a patient’s wishes might only be the focus of staff support if they flow towards independence.

Resocialization

Resocialization is the process of going back to a less restrictive treatment setting or back into the community after institutional treatment. It may also refer to independence-focused training in general. Resocialization units in psychiatric hospitals usually allow patients to stay there for a specific time period, usually two years. Rehabilitation units in long-term care may be focused on further independence too, but they have more flexible guidelines on how long a person can stay there.

Restraint

Restraint is the physical, mechanical or chemical restriction of a person’s movement. Holding someone down or tying someone onto a bed are often recognized as restraint, but giving a person a high dose of an antipsychotic or benzodiazepine to tranquilize them is a form of restraint too. Restraint, like seclusion, can only be used to avert the patient being a danger to themself or others. In the Netherlands, mechanical restriants are hardly ever used in psychiatric hospitals. They were up till recently commonly used in nursing homes on patients with dementia who run a risk of falling, but I believe regulations have changed on this. Chemical restraints are still used, though not as often here as in other countries.

Self-Reliance Is Overrated, Self-Determination Is Underrated

In his post on cripple identity, William Peace talks about the fact that non-disabled bodies with their non-disabled functions are seen as the norm, and disabled people never fit in. As Peace gets older, he develops an increasingly carefree attitude regarding these ideas, thereby embracing life and his disabled identity in life.

As I read Peace’s post, several points came to mind with regards to how his reasoning can be applied to those with cognitive disabilities or mental illness. He explicitly writes about walking as an overrated function, but what about such functions as speech, language or cognitive processes such as logical thinking and organizational skills?

I am reminded of a discussion I had with my old psychologist when I had only been in my current institution for a short while. She was discussing the “can” vs. “can’t” attitude as presented by physical rehabilitaiton patients as well as the mentally ill. She tried to explain the importanc eof having a positive attitude towards learning practical skills such as cuttign up my food (which I am physically nable to do) and cleaning my room (which I am unable to do due to executive dysfunction). What she didn’t realize is that my refusal to learn these skills is only partly out of lack of self-efficacy (low self-esteem). It is more out of a feeling that these skills are not as important. I didn’t go hungry when I lived independently, and though my house did go dirty, if I lived with my husband, it wouldn’t be much harder for him to do most cleaning whether I lived there or not. In my opinion, self-regulation skills and self-directedness are much more important. I did, after all, end up in a psychiatric crisis when living on my own.

As disabled people – and as abled people too, but they don’t seem to realize it -, we need to set priorities. I might’ve wanted to learn to cut up my food or clean my room, if I had the energy to do this amongst all the energy that it costs me to manage my anxiety, regulate my fluctuating emotions and basically stay as close as possible to mentally stable.

Let me say this very bluntly: self-reliance is overrated. Self-determination is underrated. Too often, disabled people are trrained in the skills necessary to appear as non-disabled as possible. They are rarely trained in the skills necessariry for being as self-determined as possible. This goes especially for cognitively disabled and mentally ill people, who are still presumed to have a reduced capacity for self-direction.

Even today’s psychiatric rehabilitation movement, with its focus on recovery groups, (ex-)patients as support workers, and the strengths method, still teaches that mentally ill people can live normal lives in spite of their mental illness. It does not teach that it is possible to live a normal live while embracing your mental illness, let alone that the entire idea of “normal” is hugely overrated. The recovery group I participated in in 2010 was groundbreaking in the respect that it consisted of institutionalized patients, some of whom (like myself) weren’t moving into less restrictive environments.

Less restrictive. Boy, need I talk about that? Less restrictive should mean that a person has more choices over how they live their life, not that there is less support. In this respect, the physical disability movement has already paved the road with their independent living centers for example. Unfortunately, the law here in the Netherlands is not in favor of mentally ill and cognitively disabled people in search for self-determination, because, besides needing constant supervision, the only ground for long-term care with 24-hour availability is “severe self-direction problems”.

Treatment for Its Own Sake

Sometimes, I get the impression that the treatment we get in a psychiatric institution is done for its own sake only. Like, yesterday I was irritable. I tried to communicate that I wanted the radio to be turned off. No-one was in the room except for a nurse, who went like: “Have you discussed with your therapist how you can cope with this?” She meant coping with overloading noise. I went totally defensive and defiant and told her I wasn’t going to cope with the freaking radio if no-one was there listening to it. She told me the other clients were coming soon so the radio was on in case someone wanted to listen. Well, WTF? This whole thing gave me the impression that the only reason the radio was on was to teach me distress tolerance.

Let me tell you one thing, the real world isn’t there to teach people distress tolerance. If you want me to be prepared for the real world, then don’t create these fake situations that have no meaning outside of the hospital. The nurse meant to tell me to communicate my wisht o have the radio turned off differently, but then tell me so and don’t go like: “In the real world you’ll have to live with others who want to listen to the radio.”

I know that the psychiatric institution is not like the real world. No-one beyond college age in the Netherlands lives with ten people on a hallway with just their own room. In the real world, you have to negotiate radio-listening time sometimes, but not with a nurse whose ultimate goal is to annoy you so you can learn distress toleance – unless you’ve got a two-year-old or a teenager, maybe. More importantly, real-world dynamics are not reflected in the psychiatric system, so don’t pretend that they are. Stop pretending to prepare patients for the real world when you aren’t. Institutional dynamics are the first thing that need to go if you want to prepare people for the real world. Since these are not going out the window anytime soon, let’s just stop assuming you’re preparing us for anything other than institutionalized life even if it means institutionalized in the community.

"Use Your Words."

Last Friday, Neurodivergetn K wrote a post on the phrase “Use your words.”. I only read it today and, partly because I got triggered by this post, I am going to blow off some steam about this phrase. A lot may seem like a repetition of what Neurodivergent already said, but well, there can’t be too many autistics speaking up against NTs putting their own arbitrary standards of normalcy ahead of our needs.

As readers who’re familiar with me and my blog will know, I reside in a psychiatric institution. Its aim is rehabilitation. I’ve been on a ward that had an even more open rehabilitation-focused vision at least on paper, but staff there were much more willing to bend the rehab paradigm a bit to accommodate me than the staff on this ward are. Note that rehabilitation has two meanings in psychiatry, one in which the client is as much in charge of their care as possible, and the other where the client is trained to become (or appear) as normal as possible. I’m talking about the second meaning here, as I have absolutely no problem with the first.

“Use your words.” As I wrote in a comment on Neurodivegent’s post, this phrase is often accompanied by “You’re intelligent” or “I know you can do it” or some variation on this theme. Let me address these follow-up phrases too.

“You’re intellignet.” And now what? Firstly intelligence is not the same as speaking ability. Second, what if I weren’t intelligent? Would I be cut some slack then, or would my needs just not matter as much? A variation on this theme which I’ve come to hate almost as much is “You’re an adult”. It has its own implications in light of my multiplicity, discounting part of me that actually isn’t an adult. If I act like a child, maybe it’s because at that particular point I am a child? I know the staff aren’t going to buy into that since they’ve thrown out my DID diagnosis, but it’s not like I’m any less or more multiple now that we call it BPD.

On a related note, telling me that my abilities are incongruent, isn’t going to help me. I know they are. I know I’m sometimes able to do things that I can’t do at other times. I know I’m able to do seemingly complex tasks but not simple ones sometimes. I know I can have quite spontaneous-looking, appropriate conversations sometimes and barely make any sense of my words at other times. Telling me this is not possible is denying the obvious. Telling me this is not appropriate is like telling a blind person to look harder because they can hear fine or telling a person who is night blind that they should be able to see in the dark because they could see fine during the day. (I know many night blind people are also partially sighted, but I’m simplifying the situatioon a bit.) It’s not like developmetal disabilities like autism are any less real than visual impairment just because they’re more difficult to understand and seemingly easier to overcome through behavior modification.

Let me talk about that now: behavior modification. I was going to write a separate post on that, and maybe I will write one more. Here’s the thing: telling me to “use my words” will most likely get me to pull out a script. You didn’t know I had them, clueless neurotypical who knows me just enough to see my non-autistic appearance but not well enough to truly listen? I may have somewhat more elaborate scritpts than the example Neurodivergent gave, but I do have them. This is why, when I’m interrupted or distracted while executing the script for telling the staff I’m distressed and need help, I often end up having a meltdown. And this script gets interrupted a lot of the time, oftentimes even by staff. They want exact explanations of what I want or need from them, even if they know pretty well what I need. I’ve sometimes gotten to ask for my PRN when that’s not what I needed just because it was the shortest script in that part of my brain I could access. Asking for some quiet time with a staff member, which is what mostly helps me, is a much harder script to execute. Please know: “Can I say something/ I’m distressed,” is not okay. It’s got to be: “Can I please speak to you in a quiet place for a bit when you’ve got the time? I’m distressed.” Sometimes I think it’s NTs who are literal-minded.