The Complex Matter of Lying and Mental States

July 4, 2009 at 7:57 pm · Filed under Psychiatry and Mental Healthcare

Joe Kraynak of Bipolar Beat asks: Have you ever lied to your doctor? The answer, however, is not as simple as it may seem.

Joe Kraynak assumes that some people in a depressive episode might not tell their doctor that they were at one point manic, in order to avoid the bipolar diagnosis. This may be a reason for misdiagnosis and inappropriate antidepressant treatment. However, what he fails to acknowledge is the possibility that some people don’t intend to lie about their former state at all. I was myself never diagnosed with any mood disorder, but have been in a number of situations in which I might be accused of “lying” about my mental state without intending to.

One of them occurred during my crisis in 2007. During that time, I have repeatedly asserted that I’d really never felt less overloaded than I was at that time. The reason for this “lie” is that, when I am in an extremely overwhelmed state, I cannot imagine ever having been in any other state, or will distort this idea in my mind to something more black-and-white. Because at that time the possibility that I was depressed was repeatedly considered – incorrectly so -, it may well be thought that I lied in order to influence the diagnostic process. I didn’t.

Another thing, also related to a non-existent depressive state of mine, is the incorrect pathologization of distressing but understandable states. My most recent “depression exam” occurred in December of 2008, after I had been in a terrible meltdown, including black-and-white assertions about my mental state. In a sense, I think I should’ve gotten a Noble prize for survivorship for *not* having been depressed, after a year on the locked ward, with little perspective on moving on. However, the staff did not recognize this, and sent the doctor to me to ask me the standard depression-screening questions (I am pretty sure the whole thing wasn’t really meant seriously by that particular nurse). I answered them, truthfully so to the best of my understanding – another complicating factor is that I find it hard to deal with open-ended medical questions -, and did explicitly mention having other negative thoughts besides the ones directly concerning my living situation. Of course, just because thoughts are not *about* the patient’s known stressors, doesn’t mean their occurrence is not influenced by these stressors: I at the time obsessed over the possibility of dying before the end of 2008, and by December felt bad that it was unlikely to occur, but of course these thoughts might not have been so dominant if I’d been in a living situation where I found life worth living, or knew that I would be going into one relatively soon. The bottom line was that the doctor said he wasn’t sure what to think – I had some symptoms, bugt wasn’t clearly depressed – and this whole event was never talked about again. It is possible that, again, the doctor believes I wanted him to think I was depressed. I didn’t: I knew I wasn’t in a depressive episode, but distressed I surely was, and significantly so. Who wouldn’t be, in my situation? I didn’t even find it necessary to speak to the doctor, but now that the nurses did find it necessary, I answered his questions, within his frame of reference, which is, of course, the DSM-IV. Of course the truth is that a medical doctor was not the right person to consult on my issues at all, but he happened to be the only one available. Besides, if I had asked this doctor, who had only worked at our ward for two weeks, where I should go with this problem, knowing that it didn’t fall within his expertise, he likely would’ve had no clue.

Leave a Comment

Mentally Ill Receive Inferior Medical Care

June 23, 2009 at 11:39 am · Filed under Disability Advocacy, Health and Medical Care, Psychiatry and Mental Healthcare

I haven’t been able to go online for six weeks due to a massive computer crash, which I saw coming but didn’t anticipate on in time. When I went back online a few days ago, I stumbled upon an article that states that research found that mentally ill people receive inferior medical care. Didn’t surprise me the least. Neither did the finding that did surprise the researcher: the poor care received by people with mental health issues is not linked to their active psychiatric symptoms, but to their diagnoses!

It is not so much that people with mental illness receive less medical care – in fact, quntitatively they may receive more care -, but that it is qualitativbely inferior. I haven’t yet had the experience myself, but I know from fellow patients that bias against psychiatric diagnoses often leads to less-than-standard treatment. “Oh, no need to hurry,” a nurse shouted across a full emergency room to the doctor, running over to check on a young woman’s possible neck injury, “she has a borderline diagnosis!” Some people I know get their every medical concern questioned as if it were something they either inflicted upon themselves (self-injury) or that is due to depression or stress.

And the fact is, people with psychiatric disabilities are at an increased risk of physical health conditions due to a combination of often poorer lifestyles and the side effects of psychotropic medications. Possibly, people with mental illness also seek care less adequately than do healthy people, which means they may actually need more monitoring for physical health.

Leave a Comment

BADD Behavior: Disablism in Psychiatry

May 1, 2009 at 11:45 pm · Filed under Autism, Behavior, Communication, Social Interaction, Blogging Against Disablism Day, Disability Advocacy, Psychiatry and Mental Healthcare

Note: in the process of writing this BADD post, it has taken a different turn than I’d initially intended. As I reread it, I feel that it may come across like I’m targeting specific people, eg. my former social worker, with my criticism. This was not my original intention. Rather, I was meaning to write about the impact the institution environment and accompanying mindset among staff has on people with mental illness. In fact, the point that I was trying to get across is that even well-meaning people may unconsciously dehumanize people with mental illness in an effort to keep the peace and quiet in the hospital environment, and fail to differentiate between illness-related behavior and problematic behavior that is a perfectly normal response to the institutional structure.

Today, May 1, is Blogging Against Disablism Day. I didn’t participate last year, probably because I couldn’t be sure that I’d be home to actually publish my post, even though I’d picked a theme to write on a while before the day came up. The theme I’d picked would be a more personal follow-up to my 2007 contribution on stereotypes and counterstereotypes. I wanted to write about the experience I’d had in the psychiatric hospital of staff treating me entirely differently based on whether I was “good” – ie. not melting down, not showing my irritability at other patients’ behavior, not criticizing the staff, except for maybe a few cynical jokes, and not shoving my distress too much into the staff’s face -, vs. when I was “bad”. Despite the fact that patient rights apply unconditionally unless a court has ruled otherwise (eg. in cases of involuntary commitment or incompetency), it is actually very hard to stand up for your rights when you’re “bad”. One of the reasons is that the staff are not tyrants, and treat you well when you’re “good”, thereby making you believe that you really must be bad when they treat you badly. You’re the patient, after all.

The problem is, however, that being “good” is emphatically not the same as behaving how a healthy person would behave. Rather, being “good” involves doing what the staff want you to do for their convenience. It isn’t “sick” to become desperate after sixteen months on a locked ward, after all. All my “healthy” relatives say they would’ve really become crazy far sooner than that. Many also say that they would’ve become far angrier than I did if a social worker had decided for them which of their relatives are and are not important, had forced them to sign forms to have them move out of the area, and had even suggested that they go on financial management.

A few days ago, someone on a Dutch autism forum started a discussion on the Rosenhan experiment. In this experiment, several perfectly healthy people showed up at psychiatric hospitals pretending to hear voices. All were admitted, and all but one were diagnosed with schizophrenia, even though after their admission, they behaved exactly as they would otherwise have and said that they no longer had symptoms. Everything the pseudopatients did, however, was interpreted as a sign of illness. For example, when they took notes during therapy, they were referred to as “engaging in writing behavior”, and their accounts of their lives were psychopathologized. The conclusion was drawn that psychiatric diagnoses are strongly influenced by the patients’ environment, rather than by their internal characteristics.

Of course, unlike me, the people in the Rosenhan experiment had no mental health problems and had never had any. Even so, does this mean that the mental hospital environment wouldn’t have the same impact on people with genuine mental disabilities? I don’t think so. The problem is that people with mental disabilities do display “sick” behavior besides their institutionalization symptoms, and it may be harder to tell the difference.

However, Rosenhan’s experiment did suggest that one thing that makes it extremely difficult to tell mental illness and institutionalization apart, is the lack of unbiased observation: the pseudopatients were simply thought of as patients and their behavior as illness, without any regard for the individual. And I may be developmentally disabled, and that disability may be an essential part of who I am, but I am still a person, not a behavior modification robot.

And this is exactly how some people in mental institutions seem to see us. Probably not consciously or intentionally, but it is how some behavior will come across. For instance, some people are committed involuntarily because their mental illness supposedly causes them to elicit violence from others, but their fellow patients in the institution are punished for even getting irritable with them, because their irritability is thought of as part of their own mental disorder. My frustration at the long-time hospital stay was also seen as part of my mental disorder, and so was my rage when the social worker forced me to sign Apeldoorn living facility forms, claiming that my boyfriend isn’t important since he’s never introduced himself to her. As I said, probably the staff didn’t intend to suggest that my every behavior is due to autism, but their actions suggest otherwise. One anger tantrum when the social worker forced me to sign the Apeldoorn forms, was a reason for her not to ask me for consent to contact my parents and other people important to me – except that my parents insisted that she obtain my consent before they would do anything. I still believe in this social worker’s good intentions, at least from her perspective: I am autistic and may have meltdowns when in a situation I can’t cope with. To prevent this, she probably tried to keep me away from the stress of having to hassle with living places, etc., that may have led to meltdowns. After all, this is the explanation she gave for not having obtained my consent.

Even if the assumption that any attempt to obtain informed consent would’ve led to a meltdown anyway had been true, is it really necessary to keep the peace and get the patient to do what you want them to do at the cost of patient rights? Healthy people argue, too, and often quite constructively. Healthy people won’t take it that anyone is taking away their right to decide for themselves how they want to live their lives. Some healthy people may even lose their tempers at some point, and on some occasions, they are thought of as on the right side of the matter. However, if the person arguing, or demanding that his civil rights be respected, or especially losing his temper, happens to have a mental health diagnosis and the other person happens to be a staff member, it is all too easy to dehumanize the mentally disabled person’s behavior and assume the “acting out” to be due to his illness. Well, maybe not so: people with psychiatric or developmental disabilities are disabled, yes, and that disability is an essential part of their being, but that doesn’t mean that they’ve lost their humanness and will take things that the healthy wouldn’t take.

Comments (6)

Sign the Community Choice Act Petition

April 30, 2009 at 6:55 pm · Filed under Disability Advocacy, Social Care

I am not a U.S. resident, so this legislation would not apply to me. However, for those who do reside in the U.S., the Community Choice Act is important in enabling people with disabilities and older people to stay in the community rather than having to go to nursing homes and institutions. You can sign the petition to include the CCA in Obama’s comprehensive healthcare reform package here.

Leave a Comment

Autism as Insanity Defense

April 27, 2009 at 11:24 pm · Filed under Autism, Psychiatry and Mental Healthcare

Dr. Brown of ABA4Autism discusses autism as insanity defense. His point is that it is a good thing that autism is rarely accepted as an insanity defense, because he “doesn’t want autism to get a bad name”. As much as I agree to the idea that autism by itself does not cause someone to commit a crime without knowing it’s wrong, and that it would be a prejudice to think it does, I still don’t believe that autism by definition can never be an insanity defense.

What I assume Dr. Brown wants to clarify, is that autistics are not significantly more likely than neurotypicals to commit violent crimes and that autism’s features do not turn people into criminals, unless you believe nonsensical theories like the autistics-as-sexual-predators Facebook stupidity a few months ago. Of course, problems with theory of mind or distress tolerance, which many autistics do have, do not lead to violence in the vast majority of cases, and I’m pretty sure that in situations where an autistic commits a crime, it still doesn’t automatically say that “autism made him do it”.

However, the vast majority of schizophrenics, bipolars and people with mental retardation do not commit violent crimes, either, and just because a murderer happens to be schizophrenic, for example, doesn’t mean his schizophrenia made him do it. Schizophrenia is a common insanity defense, but not every murderer with schizophrenia will get it. Clark v. Arizona is a fairly recent (2007 I think) Supreme Court case that signifies this. “Insanity”, at leasst in the United States, just isn’t defined by your DSM-IV classification, but by whether you could’ve known that your act was wrong. In the Netherlands, where “insanity” is not defined by McNaughton or any similar principle, autism is in fact a common insanity defense, because here “insanity” just means that your mental disorder had a significant impact on your crime, and no-one really knows how this judgment is made. I’d be not at all surprised if a diagnosis of mental illness or developmental disability would almost be sufficient for an insanity defense – I know only one example of someone whom the assessing Pieter Baan Center diagnosed with a personality disorder but whom they still declared sane.

This one example is Volkert van der G., who killed Dutch politician Pim Fortuyn in 2002. The Pieter Baan Centre, which is our country’s diagnostic center for judicial purposes, assessed him and diagnosed him with obsessive-compulsive personality disorder (not obsessive-compulsive disorder!), but the evaluators claimed that this disorder had not significantly influenced his crime. He was sentenced to eighteen years in jail in 2003.

But Van der G.’s case is not connected to insanity defenses only because of this – in fact, I think most people who know that he was evaluated for insanity, don’t know that he was actually diagnosed with anything -, but also because he was at one point labeled with Asperger’s. This “diagnosis” was not given by anyone who had examined him, but by a child psychiatrist who specializes in autism spectrum disorders, who based his conclusion on what he’d heard about Van der G. in the media. This controversy, that died after the Pieter Baan Center claimed not to have had to assess him for this “because he has a sense of humor”, sparked a lot of discussion in the Dutch autistic community. Most disagreed to the idea that an autism diagnosis would or should by definition have led to a declaration of insanity. Many also worried for their image, since what if the person who murdered a popular politician had the same disorder as I or my child? And what if he did get declared insane because of this, and everyone believed that autism caused him to murder Pim Fortuyn? I can understand the sentiment, but even if Van der G. had had Asperger’s, and even if he’d been declared insane on that basis, it doesn’t mean that everyone with Asperger’s is a potential murderer. By the way, in this particular case, it would’ve been extremely strange if one’d believed that a mental disorder triggered this crime, given the circumstances of the killing and Van der G.’s own statements about it, so I’m glad for this reason that he wasn’t declared insane.

However, could there be reasons for someone with autism or Asperger’s who’d committed a violent crime to be legitimately declared insane? I am not sure how strictly the Anglo-Saxon McNaughton test is applied, so I can’t speak for the United States. In the Netherlands, however, there have been quite a few cases of insanity defenses for an autism spectrum disorder. One example I heard of a few years ago involved a man who tried to set his own house on fire in a severe crisis, without any intention of harming anyone – his action was an ultimate call for help. His diagnosis, made after his crime, was some form of autism and he was sent to a state hospital due to insanity. Even though a serious crisis did not turn me into a criminal and I don’t think it ever would, I can imagine that autistic features could’ve played a role in this case. That is not saying that these same autistic features – difficulty understanding the consequences of one’s actions, for example, or seriously impaired communication skills – make every autistic, or even the majority, a potential arsonist. It is also not saying that autistics, or those with mental disabilities in general, are the only ones who can commit crimes that are influenced by the same motives – as with the sexual predators thing, neurotypicals could end up in the same situation, too. What it is saying, is that in some cases, when an autistic commits a crime, that person’s actions are significantly influenced by his autistic impairments. This is actually the same as when someone with another mental disability, that is generally accepted as an insanity defense in the U.S., commits a crime: not nearly the majority of mentally disabled people are criminals, and there are non-disabled people who commit crimes for reasons often cited when someone with mental illness is involved, but that doesn’t mean mental deficits cannot have influenced a crime. It isn’t, or shouldn’t be, about one’s labels, after all.

Comments (1)

I’m Finally at the Resocialization Ward

March 27, 2009 at 1:24 pm · Filed under Blindness, Personal, Psychiatry and Mental Healthcare

Finally, I have been at the resocialization ward for a little over three weeks. When I still resided at the locked ward, I couldn’t believe that I’d really at one point get here, because the transition was torpedoed by one thing or another so many times. First, it was the locked ward’s social worker, who didn’t want me to go here, because she doesn’t work here. Then, it took reso’s psychologists three months to decide to turn me down, based on things they could’ve known at or even before my first interview with them – the fact that I had a time-out threat policy again, for example. Then, I fought for six weeks to first get rid of the time-out system and then get reso to accept me after all. They did, but had a long waiting list. I am not sure whether my transition suffered more delays, but I think so, since a man who had a major, getting-him-to-the-most-intensive-care-ward breakdown the day I was initially turned down by reso, got here sooner than I did. However, at last, I finally got here March 2, but am still afraid to be kicked out after all. My “care coordinator” (primary care nurse) says I won’t, and when I spoke with one of the psychologists last week, she said I at least wouldn’t be kicked off for not being able to make enough progress – people do get kicked off for not *wanting* to get any more treatment, since, oh well, you are not on a resocialization ward to have a government-funded vacation, right? Now I do want to make progress, but I’ve had enough experience with training places to know that not being able to do something is easily mistaken for not wanting to, so I’m still kind of scared.

The blindness agency’s occupational therapist was finally able to come over last Tuesday, and will be able to come over weekly starting April 8. My parents are frustrated, and rightfully so, but unfortunately this is how it works: on all other moves, I had to wait for some time before I could start with mobility training. Of course, it is ridiculous.

Leave a Comment

The Real Meaning of 24-Hour Care

February 25, 2009 at 6:33 pm · Filed under Autism, Disability Advocacy, Family, Social Care

Quite often, when curebies criticize autistic advocates’ position on autistics’ care or cure needs, they not only resort to personal attacks rather than attacking the person’s opinion, but they do so in a blatantly false way. For example, they decide that the (”low-functioning”) autistic advocate who claims to be getting 24-hour care and still not wanting to be cured, doesn’t really get 24-hour care, so they are not like the curebie’s child. Just so that all the curebies in the world don’t get their expectations sky high and need to deal with disappointments once they’re trying to place their adult child: a care facility, group home or supported living place is *not* like a family.

In a family, 24-hour care for a special needs child is often taken quite literally, in that the parents will be around whenever the child is not at school or daycare. Unless they have an extremely large family, it is also one couple of parents to two or three children, which is far less than the ten to fifteen common in residential care. Of course, all parents should set time aside for themselves, and most do this, but generally speaking a special needs child whose parents say needs round-the-clock care, will get close to that. A full-time job being a Mom, in this respect, can be said to be pretty close to 168 hours a week. Of course, this is extremely hard on some parents, but it is a fact of life that comes with parenting some severely disabled special needs children. I believe the parents who say that their child gets 24-hour care and mean this, but I want to tell them all: this is not what your child’s adult services will be like.

After all, a 168-hour-a-week job is emphatically not a fact of life in the field of professional care. In the Netherlands, most healthcare labor contracts have a 36-hour full-time workweek, and there are a significant number of part-time employees in this field. Also, disabled people are put in group homes of ten to fifteen residents in many cases of high care needs. And there will never be ten to fifteen nurses running around the house round-the-clock to provide care! In total the team may consist of that number of staff members (my current ward’s team consits of I think twelve nurses, and due to staff shortage we’re now temporarily down to ten beds from sixteen), but remember they all work at most 36 hours a week. At my current ward, there are two or three nurses on the day shifts and two on the night shift. This is 24-hour care, on a locked ward so patients have a serious mental illness. At the resocialization ward which I’ll finally move to this Monday, there are two nurses during the day and one at night, and there are fourteen patients plus a few who get day treatment. It is still 24-hour care. Even on “intensive care” wards, there are usually about four nurses during the day (and two at night) for sixteen patients – and remember, this type of ward is generally only for crisis intervention, not for long-term stay.

You’d think in developmental disabilities your child would have it better care-wise than in mental health? Think again. I was astonished when I watched a documentary a while back that described a locked long-term living facility for people with mild intellectual impairments and extreme behavioral problems, some of whom had been placed through the justice system for violent crimes. Most needed constant supervision to guarantee their safety. And if you think that’s what they got, you’re wrong: there were, during the day, four support workers to twenty-four residents, and the agency still needs to cut its budget.

Some parents believe that their child will need one-on-one care when he’s an adult. Don’t think he’ll ever get it. I was just reading about a living facility for severely intellectually disabled people with behavior problems. Most of the residents need “hand-in-hand” assistance, which means a support worker will have to guide them through each and every activity. There were ten people in the facility, but only two or three carers during the day and one at night.

How come people are classified as needing “intensive care”, “one-on-one care” or “constant supervision”, and still get put into facilities that lack the personnel to actually provide this support? It’s pretty simple: asisstance with “each and every activity” generally refers to only the activities found to be important, such as getting bathed or dressed, having food, etc. The people in the severely intellctually disabled with behavior problems home were mostly “supported in their rooms” and “the concept of ‘group’ has been abandoned entirely, because these people cannot function in a group”. In the facility the documentary was about, residents were locked up in their rooms when a support worker couldn’t attend to them. I’m afraid the same happens at this other facility. Of course the residents get “24-hour care”: they will be helped with each and every daily living activity. But of course in your life, not all of your time is taken up getting your child dressed, bathing and feeding him and doing other such activities, and maybe your child would have far less behavioral difficulty if you just locked him into his room for most of the day. Good for you if you don’t think it is ethical to lock up a person into his room or to deprive him of most opportunities to socialize or do leisure activities, but the agencies who will fund your adult child’s care facility, disagree. A reason for “cure”? No, a reason for strong activism for better care.

Leave a Comment

Apeldoorn Supported Living Place Proves Conditionality of Community Supports

February 14, 2009 at 1:52 am · Filed under Autism, Blindness, Disability Advocacy, Independent Living, Personal, Social Care

This is how the system works, apparently. I called an Apeldoorn placement I’d been offered a few weeks ago, because I had concerns about their supports, and it turns out that I’m falling between the cracks in some of the exact ways that I pointed out a few days ago. I cannot get nearly enough support if I go into that place, because:

  • The staff/resident ratio is 1/16 during the day on weekdays and part of the day on week-ends (there’s an emergency staff sleeping over at a nearby place, but that’s not the problem). This would’ve been difficult already in group settings where residents share chores and can rely on each other for help, but it is pretty much impossible if I am to manage a complete household on my own. It just occurs to me that the staff/client ratio could have been higher in non-apartment settings because residence and care are not separated so the support agency gets to pay the rent. I don’t know whether this is a substantial reason though.
  • There is no external structure. The support worker claimed that this is due to its being an aparment setting, but all other apartment settngs I know (training home, the other Apeldoorn place on whose waiting list I am, and the one in Malden I slept over at in 2007) do have some external structure, for example by having the option of having dinner or coffee together in a shared part of the complex. The lack of external structure is really one major reason why I couldn’t cope in my own home (and a schedule apparently didn’t help enough): every tiny change in my non-routine, such as an unexpected problem, my persevering on a project for too long, etc., meant I lost track of what I was supposed to do and couldn’t “just do what’s next on my schedule”, and there were no external factors that could get me back on track. As a result (among other reasons), I got overwhelmed by all my chores and still ended up wandering during spare time. For those who think I’m misusing an autism stereotype for an excuse, because I “never had any trouble with changes” or because my parents didn’t have dinner ready at the same time each day, either: this isn’t really what I mean. Rather, I mean that I need *some* reminder that makes sense (and apparently, time-of-the-day alone is not enough), that I will connect to, say, cooking, having dinner, doing laundry, etc. Actually, I think in this sense the fact that I *don’t* have rigid routines, is giving me problems.
  • With regard to required independence, you are expected to be able to do the “basics” (the support worker’s word) on your own. The example she gave about cooking is you are supposed to cook for yourself, but can get help with, for example, new recipes. The same sort of thing goes for other activities. Of course, there is the fact of having had very little practice, but that is not my main concern (as I could get some practice now or at the resocialization ward on whose waiting list I am). My main concern is that, even in an optimal state, I can only cook once or twice a week. Microwave meals were invented for a reason, of course, but the same goes for cleaning, shopping, and other duties: I just can’t handle a full week’s chores (and if someone says that I’m just way too adherent to cleaning etiquette, you haven’t seen the mess an awkward, blind person can make, which my college student sister feels more urgent about cleaning up than I do).

With this stuff already, I didn’t even think of mentioning behavior. I just told the woman that I’d try to make an appointment with reso’s psychologist to discuss the matter. The project opens in 1 1/2 weeks, when it is highly unlikely that I will even be at reso yet, and new regulations make it extremely hard to get funding for a transition period. However, in all honesty, even if they could somehow get funding, I think it won’t work out, because, well, executive skills like the ability to structure your own day, taking into account a full week’s duties (plus transition-related duties), are extremely hard, if not impossible, to acquire merely through training.

Leave a Comment

Deinstitutionalization and the Conditionality of Community Care

February 8, 2009 at 7:40 pm · Filed under Autism, Behavior, Communication, Social Interaction, Disability Advocacy, Independent Living, Social Care

There is a lot of discussion about deinstitutionalization. It’s apparently getting ground in the US, and with the current ecnomic meltdown, disability agencies advocate for it as a cost-effective alternative to large developmental centers. Of course, I have nothing against deinstitutionalization, and actually advocate for it, but only if done correctly. And all the lingo thrown in about disabled people, in the time of economic crisis, especially needing to be (allowed to be) independent and productive, worries me. Not because it’s not an appropriate goal, but because there’s a risk of it being carried out the wrong way, which may in fact lead to the kind of consequences pro-institution people warn about.

In the Netherlands, whenever deinstitutionalization, which happened for the developmentally disabled already about one or two decades ago, is being discussed, one always comes up with one horror scenario or another for which deinstitutionalization by itself isn’t responsible but is being blamed anyway. People with multiple disabilities who are dying because of an unqualified person providing them with nursing care, for example, or those with behavioral differences becoming homeless or ending up in the criminal system because of inadequate supports. Deinstituttionalization isn’t to blame, but what went along with the “but they have capabilities” mindset, is:

  • College-educated registered nurses, who used to work in institutions, were fired and replaced with cheaper, yet less qualified, “care workers” and “hostesses”, who are housewives really only qualified for cleaning jobs but ending up doing nursing care in the absence of qualified professionals.
  • Since community-based people with disabilities, like everyone else, are expected to have jobs (or “day acitivities”) outside of the house, staff are usually not present in the homes during office hours. As a result, people who are sick, need to leave for work anyway or stay home without care. People who cannot work outside of the house for various reasons (inability to travel, old age, inability to cope with multiple environments due to, for example, autism), are out of luck in most community care settings.
  • People with behavioral differences are often turned down by community facilities, because these facilities claim not to have appropriate staffing, or because, despite being in the community, they are still group placements and the staff fear other clients are bothered by one client’s behavior. When people with severe behavioral problems (which could lead to criminal or seriously threatening activity if not handled adequately) are accepted anyway, they are often not provided adequate support due to staff shortage, and may end up in the criminal system or homeless after all.
  • There is often an incorrect belief behind deinstitutionalization that people out of institutions will be more independent and hence need less support than had they been left in. This presumption is, quite simply, not true for many people: whether the staff’s basic attitude is condescending or encouraging, which may make the real difference, has nothing to do with where the placement is located, and it is incorrect to assume that everyone can truly clean up their own homes, cook for themselves, travel safely on their own, etc. As a result, someone who cannot cook or clean her home, may need more support (from her “care workers”) when moving into the community than she would had her food just come out of the institution’s (cheap) catering service and the home been cleaned by the institution’s cleaner, and it is only presumptuous to think that she will learn to clean and cook eventually. And, of course, it *is* true that someone who isn’t safe in traffic, could transport herself on institution grounds without support, but will need to be accompanied by a staff member if transporting herself in the community.
  • If people get care in their own homes or apartments, they are expected to be able to cope with care only at fixed times, and the number of care hours they can receive, is limited (with daily living support, usually to ten hours a week). People who, for medical or mental health reasons, cannot cope with that, are required to go into specially set-up community facilities, in which case the other problems I mentioned, will occur.

Deinstitutionalization is not at fault here. The conditional philosophy – “But they have capabilities!” – that often drives it, often is. Because this is how the system works, this is how I used to elbow myself onto community housing waiting lists by claiming that I do have all the capabilities they want me to have, only to find out either that I’d just been too honest about one little thing and it earns me another recommendation that I first finish “treatment” (ie. stay in the institution until I meet the community placement’s criteria), or that I’ve been accepted into a community placement while having no clue whether I can actually meet up to its standards. I sometimes feel like fighting this conditionality in deinstitutionalization – because they are often disability-related problems the agencies have something against -, but sometimes, I just feel too deflated and passively accept that this is the way it works. Call me dependent, lazy, unwilling to be productive. I don’t care. I’ve been in “the system” for 3 1/2 years and that’s long enough to know it isn’t going to change just because I want it to.

Leave a Comment

Low-Functioning Autistics’ Mom Opposes Prenatal Screening

January 22, 2009 at 7:02 pm · Filed under Autism, Disability Advocacy, Pro-Life

For a change, the mother of two low-functioning autistics argues against prenatal testing. It’s usually the “higher-functioning” autistics who advocate against prenatal testing and subsequent eugenic abortion – because, after all, if people get prenatal testing, they’re most likely to abort the child if found to have the condition being tested for -, highlighting the contributions highly-intelligent autistics can make to society. Here finally we have not only an autistic who does not meet “genius” criteria, but a *parent* of children who don’t meet these criteria, advocating against prenatal testing. I’m positively surprised to have found this, finally someone who doesn’t discredit “high-functioning” autistcis who oppose cure or prenatal testing by claiming that they’re “not like my children”. and therefore have no say in the matter – except maybe that prenatal testign is not likely to distingiuish between “high-functioning” and “low-functioning” autism. That is not the point in opposing prenatal screening and eugenic abortion at all!

Leave a Comment

Older Posts »