It’s Just Us, Or Is It?: Power Dynamics in Care

Posted on by Astrid

I am currently reading a book called The Dark Side of the Mind by Kerry Daynes, a memoir by a female forensic psychologist in the UK. In her first chapter, Daynes writes about how her college date tells her there’s no justice, it’s just us. Then she goes on to talk about her first job, which is really an unpaid position, at a correctional facility called Wakefield. There, the philosophy is “us vs. them”, “us” being the “good” guys (or girls), ie. the staff, and “them” the inmates, who often committed horrific crimes, such as rape, murder or both. This “us vs. them” mentality was often used to reinforce a rather exaggerated power dynamic, to say the least. As it turns out, it’s not that black-or-white, in that, several years later, a staff member Daynes worked with was given a long sentence for similar horrific crimes.

I want to use this example to talk about power dynamics. Not in the prison system, as I have no experience with that, but in the care system. In a sense, in care, at least as much so as in prison, there should not be “us” and “them”, since we’re all people first. The mere fact that I am disabled and my staff are currently non-disabled, shouldn’t make a difference. Neither should it when it comes to my fellow residents who are deemed unable to make their own decisions.

I just had a discussion with one of my staff about this. This person maintains that she’s in fact at my service, almost like I’m her employer. When I pointed out that she gets to decide when it’s necessary to physically drag me to my room (not that she personally ever has), she said this is because I live with nine other people. Yes, but if I lived with nine other people without staff, such as in student accommodation, no-one would be dragging me to my room for yelling and, if the situation did escalate too much, the police (who everyone except for maybe the police themself admits have a position of power) would be called.

I also mentioned some situations from the intensive support home. For example, staff grabbing a large cookie while giving us a tiny biscuit. “Who’s boss here?” one of the staff once actually asked one of my similarly opinionated but unfortunately less eloquent fellow residents. She named the names of the support coordinators. “And when they’re not here?”, he continued, clearly wanting to hear that the available staff are. I pointed out later that no-one is boss here, only to be told that this was a simplified way of explaining this to my fellow client.

When I told my current staff about this and other examples, I was told this is the way the intensive support home works and that she doesn’t agree with it. At the same time, she told me that, if I want a large cookie, I can get it because I’m capable of making my own decisions, while my fellow residents can’t. While I understand this, on a large scale, may be so, it isn’t necessarily true: I don’t technically follow my agreed-upon food plan either and that’s considered my responsibility, while if a fellow client points to a single extra cookie, that’s denied because their family (or the staff) agreed on a food plan. However, if I have an extra cookie, it will do the same for me as it will for another person (unless said cookie has allergens in it for the other person or whatever). I wanted to raise awareness of how, on a micro level, staff, including the staff who believe they’re at our service, are exercising their power more than they should be.

Power dynamics, for clarity’s sake, cannot easily be eradicated. Nor am I absolutely sure they should be. However, those in positions of power should be extra conscious of their position. And especially when it comes to situations in which they believe they have every rhight to make decisions for another person, such as when I got dragged to my room and when the staff decide another resident cannot have a large cookie (but said staff and I can).

Finding My Crafty Tribe #JusJoJan

Posted on by Astrid

I first started out crafting as an adult in 2012. Back then, it was card making. Well, let me tell you, picking that craft wasn’t the wisest choice I could’ve made. I’m not saying blind people cannot do card making per se, but I for one could not. And, even though at first I was supported in the process by my fellow card makers in what were then still E-mail groups, criticism quickly grew.

Then came jewelry-making. Same thing really. Though I can string together a basic necklace or bracelet and I don’t need kid-level beads for it, I never moved beyond that. I did make the wise choice of not participating in swaps or the like, like I had done with card making.

For a while, I participated in the trend of rainbow looming. Remember that? It’s so 2015!

Then came soap making. Though I can create a simple melt and pour soap, the fun really disappeared quickly because I never moved beyond that and the only thing I can experiment with are different scents.

And then – after a few steps along the way that I decided to skip for brevity’s sake – came polymer clay. Though I am still a beginner at that too despite having worked with the medium for 2 1/2 years and will most likely never move beyond beginner stage, I feel more like this is a medium in which I can use my creativity. Much like with card making originally, it’s a very versatile medium even for total novices.

Within the polymer clay community, I do have my tribe that I stick to. For example, there’s the Dutch polymer clay Facebook group, in which most members and all admins are incredibly supportive of me and my work. In February of 2023, I helped think up the theme for the monthly challenge. It became “unicorns”, of course, which was probably a little too narrow, as I was the only one who ended up participating. However, I do love the fact that the other members do consider me a valued contributor to the group.

This post was written for #JusJoJan, for which the prompt today, coming from me, is “craft”.

Never a Perfect Day: Is It a Bad Attitude?

Posted on by Astrid

Yesterday, as I was paging through some collections of journaling prompts I own, I came across a prompt that said: “Today was a perfect day because…”. Now I would counter that not a single day in my life was perfect. That in turn reminded me of something my assigned staff at the intensive support home used to complain about. She’d say I never said I’d had a great day and rarely said I had a good day. Most days though, I said my day was “okay”. I’d regularly say a shift had gone “pretty well”. To that, she often asked me to clarify what didn’t go well, since I didn’t say it went well, but said “pretty well” instead. According to her, even if I’d had a perfect day care-wise – my day schedule was followed precisely and I’d gotten all familiar staff -, I’d still find something to complain about.

There are several things I could add to this. For one thing, I wasn’t the one complaining. I think “pretty well” or even “okay” isn’t negative. For another, I never had an entire day where my day schedule was followed precisely and I was only supported by familiar staff. I do have those days now.

Another thing is, I am in near-constant physical discomfort. This may be relatively mild, but it is present nonetheless. I am also perpetually in a state of overload. For this reason, merely going through the day takes me more effort than it would a non-disabled person. I realize neurotypical, non-disabled people cannot grasp what it is like to feel what I feel, but to label my lack of overt positivity as somehow being a bad attitude, is quite something different.

Before and After

Posted on by Astrid

I rarely if ever turn the pages of an actual book these days, since I can’t read print and Braille books are just too clunky to have around. Turning pages, for this reason, is mostly just a figure of speech: I can turn the page on a memory, turn pages in the book that is my life, etc.

Sixteen years ago today, I experienced a turning point in my life, as on that day, my fragile mental state completely collapsed. The night after, at roughly 2AM on November 3, 2007, I was admitted to the psychiatric hospital.

Since then, my life consists of a “before”, in which I appeared to more or less function in life according to non-disabled standards (but was really merely surviving), and an “after”, in which I appear to have given in to the disabled side of me (but am slowly learning to live). I struggle to unite the two.

This post was written for this week’s Six Sentence Story Link-Up, for which the prompt word is “turn”.

Work: Employment and Day Activities for People With Intellectual Disabilities #AtoZChallenge

Posted on by Astrid

Hi everyone and welcome to my letter W post in the #AtoZChallenge. Today, I want to discuss work and day activities for people with intellectual or developmental disabilities.

People with a mild intellectual disability and no additional problems can often work paid jobs that would otherwise be performed by typically-developing adolescents, such as filling shelves in a supermarket or being waiters in a restaurant. They may not be able to complete all duties required for these jobs, but in the Dutch system, if you can do a task that is part of a job and have minimal employee skills (such as coming on time, respecting authority, etc.), you are expected to join the mainstream workforce. I, thankfully, have not been judged to meet these criteria, but then again I’m lucky in that I’ve been on disability benefits since 2004. A few years back, I heard of a profoundly and multiply disabled woman at my day center who somehow was judged to meet the criteria. The work specialist had probably never seen her, as they said she could do simple manual labor, while she had severe spastic quadriplegia.

Alternatively, there are sheltered workshops for people who can work, but need to do things at a slower pace and need some more support than can be reasonably expected within the mainstream workforce. However, these workshops have been facing significant budget cuts.

When this, too, isn’t an option, you enter the world of day activities. Those still can be “work-like”. In fact, most day activities for more cognitively capable intellectually disabled people simulate a work environment. Some of these activities are truly meaningless, in that the staff will let clients fill the same boxes with a number of items repeatedly only to empty them again so that the client can fill them once more. I honestly have very strong opinions on this: if it’s truly what a person wants and there’s no way of making the activity actually meaningful, I’m fine with it. Otherwise, I don’t see why day activities need to be “work” and things like crafting or music can’t be day activities for more cognitively capable individuals.

For more severely disabled individuals, day activities are usually sensorially-based. This includes snoezelen®, which is being in a room where the sensory environment can be completely controlled to suit the individual’s needs. I actually love this, although only for about 30 minutes at a time.

Other activities include cooking and baking, with which the clients usually don’t really help (although some moderately disabled people can) but will experience the sensory stimuli associated with the process. For example, I used to attend a group for profoundly disabled individuals and, when we’d bake something with apples in it, the staff would massage the clients’ arms with an apple. Music, story time, and simple crafts are also common activities for this population.

I, personally, if I had to choose a day activities setting, would choose the one for more severely disabled people. I know I can’t really function in a group setting, which is why I’m stuck at the care home for now, but I honestly have zero interest in meaningless labor.

Visibility of People With Intellectual and Developmental Disabilities in Mainstream Society #AtoZChallenge

Posted on by Astrid

Hi everyone. I’m really late writing my letter V post in the #AtoZChallenge. I am not too excited about today’s topic either, but that might change as I write. I just came up with it two minutes before opening the new post window on WordPress. Today, I want to talk about visibility of people with intellectual and developmental disabilities in mainstream society.

Until the mid-1990s, individuals with intellectual disabilities were routinely institutionalized on grounds like mine, sheltered away from the general public. While there are advantages to this, it did mean the general population hardly saw any individuals with intellectual disabilities, especially not adults or those with more severe disabilities.

In the 1990s, institutions were often demolished altogether and individuals with even the most severe disabilities were moved into the community. This, however, did little to help society be more accepting of people with intellectual disabilities.

Now, with “suited education”, which was introduced in the mid-2010s, individuals with disabilities are encouraged to attend mainstream education if at all possible. This means that more people with mild intellectual disabilities and other developmental disabilities, who would otherwise attend special ed, are now in regular classes.

I, having been forced into mainstream education with very few accommodations, am not a fan of “suited education”. My opinions on deinstitutionalization are mixed. While I do feel that we need to be allowed to be visible in mainstream society, I do not feel that this is a case of the disabled needing to assimilate or be “normalized”. Truthfully, I do not feel that we need to prove our right to exist beyond the margins. That being said, the reality is that society doesn’t want us. At least, it doesn’t want me, a high support needs autistic and multiply-disabled person. When I still ventured out into the world on my own, I had just a little too many encounters with the police that often weren’t pleasant.

Quality of Life As It Relates to Intellectual and Developmental Disabilities #AtoZChallenge

Posted on by Astrid

Hi everyone and welcome to my letter Q post in the #AtoZChallenge. Today, I want to talk about quality of life. This is a concept often used in medical ethics to determine whether someone’s life is “meaningful”, in this sense, “meaningful” enough for life-saving treatments. For instance, when I was a baby and sustained a brain bleed, my parents wondered whether I would later have sufficient quality of life for life support to make sense.

People with intellectual and other disabilities are, in this respect, often seen as having a lower quality of life regardless of their subjective experience compared to people without disabilities. After all, many people with intellectual disabilities cannot work, live independently or have long-term romantic relationships. That is, not in the same ways that non-disabled people can.

However, if we judge people’s quality of life by their earnings, their ability to live independently without any supports, and non-disabled people’s ideas of what constitutes a “normal” long-term romantic relationship, we are discriminating against rather than affirming people with disabilities.

Another way of employing the concept of quality of life is to look at what exactly brings meaning to each individual’s life, rather than to measure how meaningful each life is by how well-accomplished an individual is. This way, quality of life is useful even for people with profound intellectual and multiple disabilities. The Dutch Center for Consultation and Expertise has created a questionnaire on quality of life, which should be used as a stepping stone for first determining a person’s quality of life and then ways in which it can be improved.

For people with profound intellectual and multiple disabilities, quality of life really is often determined by tiny things. I mean, even for them self-determination and independence might be underlying values, but these are reflected in very small things. For example, I read about a discussion on the quality of life questionnaire between a family member and staff of a profoundly and multiply disabled person. The topic concerned his daily walks. One of the people involved said the client probably preferred to be taken on walks at least twice a day, while the other said he seemed not to like his walks at all. The difference turned out to lie in the way the people approached the walks: the person with whom the client didn’t seem to want to walk, pushed the wheelchair at a rapid pace without stopping, while the other walked slowly and took frequent breaks to show the client his surroundings. This shows how quality of life may be as simple as a slower walking pace.

Long-Term Care for People With Intellectual and Developmental Disabilities #AtoZChallenge

Posted on by Astrid

Hi everyone and welcome to my letter L post in the #AtoZChallenge. Today, I want to talk about long-term care as it pertains to individuals with intellectual or developmental disabilities. My post is going to be a bit centric to the Dutch situation, as that is what I know best.

In the Netherlands, people who need lifelong care fall either under the Long-Term Care Act or the Social Support Act. Criteria for the Long-Term Care Act are very strict, as it covers lifelong 24-hour care in a care facility (or in some cases at home, but I don’t know that much about that). In other words, to qualify for this type of care, you need to prove that you will never be able to live without 24-hour care. The Social Support Act covers community-based supports, but also temporary supported housing, such as independence training for young adults. (Care for under-18s is covered by the Youth Act, which is in some ways similar to the Social Support Act but covers more domains.)

The Social Support Act is implemented by the local government. This means that, if you decide to move while receiving social care, you’ll need to reapply. Since care under the Social Support Act isn’t lifelong either, you will also often need to reapply. Some cities will grant significantly disabled people funding for five years, but some won’t and this means you’ll need to have a “dinner table talk” as assessments are called, each year. On the other hand, under the Long-Term Care Act, your right to your care profile is lifelong and countrywide.

Care profiles make up the funding classification system in long-term care. These care profiles are based on one’s primary care ground and then on one’s level of care needed. There are criteria for each care ground and then criteria for each level. For instance, for intellectual disability care profiles, an IQ below 85 that was apparent before the age of 18 is required. I do for this reason obviously not qualify for an intellectual disability care profile. My care profile is based on visual impairment.

Until 2021, psychiatric disorders, and that included autism if you happened to have an IQ above 85, were exempt from qualifying an individual for the Long-Term Care Act. The reasoning was that mental illness is treatable, so individuals with psychiatric disorders cannot prove they’ll need 24-hour care for the rest of their lives.

Back to care profiles. For intellectual disability, there are I think six different profiles. Most people with profile 3 and 4 (profiles 1 and 2 no longer exist) will live in community-based supported housing. I am more familiar with people with care profile 5 and 8, which are severely intellectually disabled people who need a lot of (profile 5) or total care (profile 8). I am also familiar with profile 7, which is for individuals with an intellectual disability and significant challenging behavior. My visual impairment care profile is comparable to profile 7 in intellectual disability.

These three profiles I mentioned, are the only ones that can qualify a person for “extra care”, ie. what I usually refer to as one-on-one support. Extra care, unlike the care profile itself, is temporary and specific to the regional Care Office. For this reason, if I am to move out of the area of my Care Office, I will lose my one-on-one and my new care agency will need to reapply.

Legal jargon aside, what is it like living in long-term care? Well, most agencies for the intellectually disabled have one or more main institutions but they do aim for community-based living when possible. In fact, when integration was hyped up in the 1990s, some agencies simply demolished their institutions and started moving even the most severely disabled or behaviorally challenged individuals into the community. Back in 2006 or 2007, I criticized a documentary criticizing this move, saying it was poor care that caused deinstitutionalization to fail. However, let me just say I’ve made up my mind.

Justice: Issues Facing People With Intellectual Disabilities in the Criminal Justice System #AtoZChallenge

Posted on by Astrid

Hi everyone. I’m once again really late writing my #AtoZChallenge post and actually considered not writing it today, but that felt rather off. For my letter J post, I am writing about issues facing intellectually disabled people in the criminal justice system, be it as victims, witnesses, suspects, defendants or incarcerated individuals.

There are many issues for these individuals. For instance, people with an intellectual disability are far more likely to be victims of crime than the general population. For violent crimes, they are twice as likely to be victimized, whereas for other crimes, the ratio is even higher. For instance, people with an intellectual disability are easily exploited.

That being said, crimes against people with intellectual disabilities are not prosecuted as often as crimes against non-disabled people. The reason may be that intellectually disabled people aren’t viewed as credible witnesses.

When people with an intellectual disability are themselves suspects, they often do not get appropriate supports and reasonable accommodations to allow them a fair trial. In the UK, people with an intellectual disability can access an “appropriate adult”, who isn’t their lawyer but whose job it is to make sure their disability is accounted for during involvement with the justice system. This as far as I know does not (yet) exist in the Netherlands or the United States.

Many individuals particularly with a mild intellectual disability end up in regular correctional facilities because either their intellectual disability wasn’t recognized during trial or they don’t qualify for an insanity defense. Unfortunately though, the regular prison system can’t really accommodate these individuals. One of the student staff here used to work in correctional facilities and this motivated her to retrain as a support worker.

In the United States, people with an intellectual disability are exempt from the death penalty. However, it varies by state how it is determined whether a person actually has an intellectual disability. In some states, the jury decides on this, whereas in others, it’s the judge. Either way, I feel this is discriminatory, as neither a lay jury nor a judge are trained to recognize intellectual disability. Now I oppose the death penalty anyway, but I feel this lack of proper identification could affect individuals not at risk of execution too.

Historical Perspectives on Intellectual and Developmental Disabilities #AtoZChallenge

Posted on by Astrid

Hi everyone and welcome to my letter H post in the #AtoZChallenge. Today, I will discuss some of the history of intellectual and developmental disabilities.

Throughout history, people with intellectual and developmental disabilities were feared and stigmatized. However, it wasn’t until the mid-19th century that societies in the western world started taking action to take care of them outside of family homes. At first, institutions were more or less educational, based on the idea that people with intellectual disabilities could learn too. However, towards the end of the 19th century, there interestingly was a shift away from educating towards warehousing. This was when large-scale state institutions were built.

An interesting turn involved the work of Wolf Wolfensberger around the mid-20th century. He believed in “normalization”, a term still used today. In fact, I saw it in the job description for support workers at my home. To be clear, I cringe at this idea, because who decides what is “normal”, anyway? Of course, the idea really should be to value intellectually disabled people’s contributions to society as much as non-disabled (“normal”) people’s. However, I personally find this term used when I am refused a plastic coffee mug to drink from, because a ceramic mug is more “normal”. For those not aware, due to my mild physical disability, I find a plastic one easier to hold.

I can’t end this post without touching on the Nazis’ treatment of the intellectually disabled. Initially, they were open about their eugenic “euthanasia” program, using intellectually disabled people to test mass murder techniques on they could later use on other groups such as the Jews. When families and other people started protesting too much, they went on in secret. The usual methods of killing disabled people in this later stage were starvation and medication overdoses.

I also should really touch on the ever-changing terminology surrounding intellectual disabilities. In the early 20th century, people with an intellectual disability were called “feeble-minded”. Then came terms like “idiot”, “imbecile” and “moron”, referring respectively to people with a severe/profound, moderate and mild intellectual disability. Then came “mental retardation”, which wasn’t actually removed as a term from the Diagnostic and Statistical Manual of Mental Disorders (DSM) until 2013. The current term in DSM-5 is intellectual developmental disorder, but intellectual disability is most commonly used.