Tag Archives: Disabilities

The Other Kind of “Pushy Parents”: My “Mind-Blowingly High” IQ and My Need for a Disability Label

I originally intended to write a post on my experience of the other kind of “pushy parents” when the “Hooked on Labels” report first came out. However, I felt somewhat kept from disclosing my parents’ take on what might or night not be wrong with me, because after all I’m still in the assessment process. A rather hurtful comment by my father last Friday made me want to write about this anyway.

By the other kind of “pushy parents”, I mean parents who deny their child a disability label or services for special needs children when the child needs this. Of course, I do have a disability label – I am blind -, and of course, I did go to special ed. It was clear to my special ed teachers and professionals that I had social, emotional and behavioral problems, among other issues, for which I needed help. Most of them however denied my high IQ. As a result, my parents fought for years to get this recognized and to get me an academically challenging education. They eventually won, only to have me go back into the care system after six years of mainstream secondary school.

My parents are incredibly disappointed in me. My father last Friday even went so far as to say that, in a contrived kind of way, I alwasy manage to end up in institutions. Somehow, with my mind-blowingly high IQ, I manage to always manipulate professionals into providing me support I don’t need.

Never mind that my IQ isn’t as mind-blowingly high as my parents would like to believe. My verbal IQ was once measured at 154. This is within the highly (not exceptionally) gifted range. This IQ score was measured exactly once. Other times, I scored much lower, usually around 130. My performance IQ can’t be measured on the Wechsler scales, because I am blind. There is a non-verbal intelligence test for visually impaired children (unfortunately there’s no adult version). I got it administered when I was eleven, but had so much trouble and was so easily frustrated that the ed psych couldn’t finish the test. Of course, my parents likely reasoned that this wasn’t due to poorer non-verbal skills but due to my refusing to do tactile assignments because I didn’t accept my blindness.

And of course, there is no reason for that low frustration tolerance and all the social, emotional and behavioral challenges I’ve ever had, except for my refusing to accept my blindness. My parents say I didn’t have behavioral challenges at all until I transferred to the school for the visually impaired. Makes me wonder why I had to transition at all, since it wasn’t because I had to learn Braille. After all, I transferred in the middle of Kindergarten and didn’t start Braille lessons till second grade.

However, even if I didn’t have obvious behavioral problems – ie. aggression or self-harm – as a young child, I definitely did show signs of social and emotional weaknesses and sensory issues. I was intrigued by strings of information, had trouble relating to other children and had stims and sensory aversions. These may not be problems a parent pays attention to when 1. the child has low vision and 2. the parent believes the child is mind-blowingly intelligent.

I understand some peculiarities in a child can be cute. I remember, for instane, my father bringing me the home supermarket’s peanut butter in the hospital because I wouldn’t eat the hospital’s brand. I was about five then. I remember my mother searching every clothes venue in town because I would only wear seamless socks. My parents were proud that, at age two, I had memorized the underground stops. My parents didn’t mind that, at the same age, I made this crawling-in-one-place movement in bed. They were surprised when I still did it at eight, frustrated when I still did it at twelve and outright angry when I still did it at eighteen. (For those who wonder, I stopped this behavior when I went to independence training at age nineteen.) All of these are potential signs of autism or similar disabilities. I wouldn’t have minded my parents denying that these are potential signs of a disability if they’d always accepted me for them. But they didn’t. Instead, they grew increasingly angry with me for my idiosycrasies. In fact, my self-discovery process relating to autism started with my father using “autistic” as an insult. He should be lucky that I cared to google the DSM criteria before self-identfying with a disorder that he’d insulted me with, or I’d have far more self-diagnoses than I ever had.

And here I am at age thirty, nearly fifteen years into my discovery process with regards to autism. Suddenly, somehow, the behavior that my parents found cute when I was two but were desperate for me to change when was eighteen, is no longer a problem. My mind-blowingly high IQ is, because I use it to con people into believing I deserve a disability label and services that I don’t need.

One last point. Suppose I do really have as mind-blowingly high an IQ as my father claims I do. So does he. Suppose I could use that mind-blowingly high IQ to manipuulate every single professional around me. So could he. So who out of us is the one who is being manipulative? Think on this.

Spectrum Sunday
Hooked on Labels - responses & other relevant posts linky

“Pushy Parents”?: A “Pushy Adult”‘s Opinion

There has been some talk around the UK special needs blogosphere about a recent report that suggests parents may be pushing for special needs diagnoses when these are not needed. The report is poignantly called “Hooked On Labels”. It points out that many teachers feel that pushy parents are responsible for unwarranted learning or behavioral difficulty diagnoses. The report does not ask for parents’ views and did not ask anyone to quantify how many parents might be working the system to gain diagnoses their children don’t need.

I understand both sides of the issue. My father used to work at a secondary school with at the time around 1500 students. Of these, at one point, 139 had a formal dyslexia diagnosis. At the time, it was thought that only 1% of the population have dyslexia, hence suggesting a serious overdiagnosis. I just googled it and found current estimated prevalence rates as high as 17%. Assuming that reading ability runs on a bell curve, this would indicate that those only one standard deviation below the norm would be classified as dyslexic. Now I have no clue whether reading ability runs on a bell curve, but if a disability occurs in as many as 17% of the population, in my opinion, it can barely be called a disability. This means the system is failing, not the student. Either that, or parents are being pushy.

I find it interesting that parents are automatically blamed for overdiagnosis of learning or behavioral difficulties. Some teachers surveyed for the report suggested parents were working the sysstem to get accommodations for their children. Some even said perhaps parents wanted these children to enter into more competitive education which they otherwise would not have been able enough for. I do believe there may be some parents who get their children labeled with disabilities in order for them to be able to compete. However, doesn’t that mean that schools are just too focused on competition rather than individual differences? If you need a diagnosis to get your idnividual strengths and weaknesses recognized, isn’t that the problem rather than parents seeking that diagnosis?

I have always, ever since I first self-diagnosed with autism in 2002, believed that, if a child doesn’t cope, either the child has something going on or the system is screwed. I have always advocated for more individualized educational programming, but this doesn’t happen yet.

Mind you, I disapprove of parents seeking labels for their child – or adults seeking a label for themselves – just so they can get into special ed, collect disability benefits or the like. That’s not fair and if it happens, it needs to stop. This is however talking extreme examples. With how restrictive the special education and benefits systems are these days, I don’t believe many people would be able to fake themselves or their children into them. Where accommodations at home or at school are concerned, I don’t think anything is wrong with demanding them. Like I said, the need for labels to qualify for them, is the problem.

Some people see me as “working the system”, too. They don’t deny that I’m disabled – they can’t deny my blindness -, but they do deny that I’m as disabled as I claim to be. I asked for a second opinion when I was given a diagnosis that by some is perceived as meaning I misuse the system. Now dependent personality disorder is a genuine mental health condition, not willful behavior, but even my psychologist has some trouble seeing that. Treatment for DPD is not a kick in the behind to solve your own shit, but even my psychologist has some trouble seeing that, too.

In my case, the DPD diagnosis resulted from the same flawed logic that might get parents to seek learning or behavioral difficulty diagnoses for their children: the need to always have a label to explain every single need a person has. The occupational therapist from the blindness agency said my difficulty making tea wasn’t due to blindness. Another occupational therapist said it wasn’t due to motor difficulties. My psychologist assumed there are no executive functioning diffiuclties, so it wans’t due to that either. Since there needs to be some explanation, my psychologist decided to consider it a sign of dependence and to label that dependence DPD. As a side note, my husband tried to make tea with his eyes closed and it was way harder than it is with his eyes open.

I am often told that I desperately want to be different and that’s why I seek an autism diagnosis. I do see myself as different indeed, but I don’t need an autism diagnosis for that. There’s “highly sensitive”, “introverted”, “intellectually gifted”, and probably others that don’t require a shrink. I don’t even seek an autism diagnosis specifically – I seek recognition of my impairments.

Like I said, I have always felt that, if I fall through the cracks with the support I do get, either something’s wrong with me or something’s wrong with the support system. If blindness could get me the support I need, I wouldn’t have sought a mental diagnosis. For your information, it wasn’t me who sought my first autism diagnosis in 2007. They were professionals working with the blind. If I am just a lazy, unmotivated fatass who willfully misuses the system, I shouldn’t even get a DPD diagnosis – the label for that is malingering.

Back to pushy parents. It is my firm belief that there are as many parents who ask for labels their child doesn’t need, as there are parents who deny their child labels they do need. The solution to both is individualized support.

Hooked on Labels - responses & other relevant posts linky

Adaptations I’ve Used for My Disabilities

A few months ago, I wrote a post in which I described my limitations in as much detail as I could. I had just agreed to settle on a brain injury diagnosis rather than autism, so had to figure myself out all over again. Since then, that diagnosis was revised several more times and I finally decided to want a second opinion. I want answers to what’s going on with me.

The good point of that post I wrote, however, is that I felt free to describe my limitations in a non-judgmental way. As a follow-up, I am going to write a post today on the adaptations I’ve used throughout my life for dealing with these limitations.

The first adaptations I remember using, when I was about four, were not for what most people think of as my primary disability, ie. blindness. When I was four or five, I had to have my left foot in a cast to prevent my heel cord from becoming too short. This problem is common in children wth motor difficulties like cerebral palsy, though it occasionally happens to children with other neurological conditions too. I also had limited strength in my hands, so I got to use scissors which bounce back automatically. When I finally got to use a Braille typewriter, it had lengthened keys which were easier to press, too.

When I went to the school for the visually impaired at the end of Kindergarten, I was introduced to large print adn later Braille. I started learning Braille when I was seven-years-old. Because I was a print reader before I became a Braille reader, I had an advantage and a disadvantage. I could already read and knew my letters, but Braille wasn’t my first written language. I didn’t become truly proficient at Braille till I was around twelve and still can’t read it as fast as some blind people.

Apparently, around age seven, I had enough vision to ride a bike. I didn’t have the balance though. I still don’t know whether it was my parents being pushy or I truly had enough vision to safely ride a bike, but in any case I got a large trike paid for through the city department of disability services. My parents transported it to our new city when we moved when I was nine, even though this required approval from the authorities. I used the tricycle for about five years, until I became too blind to safely ride it even for purely leisurely purposes in my quiet neighborhood.

By the time I transferred to the school for the blind at age nine, I no longer needed most adaptations for my motor difficulties. I could use a regular Braille typewriter and in fourth grade, we weren’t crafting anymore anyway, so no scissors. I had also by this time become a full-time Braille user, though particularly in fifth and sixth grade I still peeked at the large print atlas every now and again. I got a handheld magnifier for my birthday or St. Nicholas around that time, because without it I couldn’t use the atlas. I had a large collection of tactile maps too, which I also loved.

When I was eleven, I got my first laptop with Braille display. I had occasionally used my parents’ computer before then, but had by this time long been too blind to even see very large letters on the screen. I tried for a bit to use a screen magnifier on the school computer, but I quickly learned to use Braille and syntehtic speech on my own computer.

I also had a white cane, of course. I started cane travel lessons when I was around seven, but rarely used my cane until I was fourteen. Then, when I had entered eighth grade in mainstream education, I had realized I was going to look blind compared to all fully sighted fellow students anyway so I’d better use a cane.

I went through school using mostly my computer for learning. We had a number of tactile educational materials, but I rarely used these. I hated tactile drawings, because I had an extremely hard time figuring them out.

In college and university, I used my computer with Braille display only. I also had gotten a scanner, so that I could scan books that weren’t available in accessible formats. A few years ago, I bought myself an OpticBook scanner that is especially good for scanning books. I rarely used it though, because eBooks became accessible to screen reader users in like 2013. I also rediscovered the library for the blind and last summer, like I’ve said, became Bookshare member.

I never used adaptations for cognitive impairments even after my autism diagnosis. I wanted to learn to use some and I still badly want to get a weighted blanket someday. I also am currently exploring adaptations for my fine motor issues. Because I felt more secure this way, I did for a while use a mobility cane. However, it was too long, then when someone had sawn off a piece it was too short. Also, it isn’t safe to use a mobility cane for me without also using my white cane and because of limited use of my left hand, I can’t use both. The adaptive equipment store does sell mobility canes with the white cane look, but these only have the advantage of making one recognizable as blind. They can’t be used for feeling around for obstacles. I could of course use a mobility cane with the white cane look in place of my white cane when walking sighted guide. However, I have learned to use my white cane for some support. The main reason I choose to use my white cane rather than a mobility cane with white cane look, however, is that I feel too self-conscious. I feel that I’m not mobility-impaired enough for this. I do wonder whether I’d feel more confident walking if I had a mobility cane, but I fear people will judge me for exaggerating my disability.

Describing My Limitations

Many years ago, an online friend of mine was part of a disabled people’s ministry that explored what it meant to be disabled. She wanted to get me involved too, but at that point, the ministry was closing down, so she started her own discussion group. The first question we got was to introduce ourselves without mentioning our disabilities. I don’t know whether I did this with my last post, but I don’t want to do things over again. The second question was to describe your limitations. We could mention diagnoses, but the focus was on how disability limited us. I am now trying to answer this question in this post.

My first disability is blindness from retinopathy of prematurity. My vision is measured as light perception only. Technically, this means i can see the eye doctor’s flashlight when it’s brought into my visual field but I cannot tell what direction it comes from. This commonly leads to the misconception that people whose vision is measured as light perception only, are essentially completely blind. In truth, I can orient to light – just not the eye doctor’s flashlight. I can visually locate windows and see whether a light is on or off. With that last one, I do often need to check twice to be sure and I often find it easier to memorize the position of the switch than to depend on my vision.

Then it gets hard. I used to have a diagnosis of autism, but since that was removed, I now have to describe my limitations without depending on a catch-all label. Let me try. I have sensory processing difficulties. I am oversensitive to sounds and textures. With regards to taste, I am a sensory seeker, in that I crave spicy food. I can also be a seeker in the vestibular sense. I used to love to swing and when the movement therapist at my old institution had a trampoline set up, I was over the moon.

I may also have auditory processing issues. I have trouble understanding speech sometimes, especially in a crowded place. I haven’t had a hearing test in forever, so can’t be sure that it’s processing and not my hearing itself. Sometimes though, I do hear something, ask the other person to repeat it and then before they repeat themselves, I process what was said.

I also have social difficulties. I can keep a reasonably normal-sounding conversation but it takes me a lot of energy. I have trouble with reciprocity, in that soetimes all I do is listen and sometimes all I do is talk. I can’t do group conversations, because I get overwhelmed.

I have mild communication issues too. Sometimes, when anxious or overwhelmed, I go mute or stutter or have trouble finding the right words. I remember going mute in high school too, but not sure whether I had these issues before that. It could be anxiety, since I also have that. My psychologist is considering diagnosing me with generalized anxiety disorder, which basically means you worry to an extreme degree about all sorts of things. There are also additional symptoms, like difficulty concentrating, physical tension, etc.

I have cognitive issues too. This may sound stupid, because I have a high IQ. Maybe executive dysfunction is a better word. I appear lazy sometimes, because I get easily overwhelmed by relatively complex tasks and then end up not doing them at all. I also feel anxiety when people ask me to do things, but when I take the initiative, I feel more confident. I wrote earlier that this could be pathological demand avoidance. However, when for instance my husband asks me to do something, i’m fine with it unless it’s a complex task.

Then I have emotion regulation difficulties. I used to have a diagnosis of borderline personalty disorder, but that can’t co-exist with the brain injury I suffered from a brain bleed and hydrocephalus. I don’t have the relational instability that many people with BPD have. Mostly, my emotions are extreme. In this sense, I relate more to the profile for multiple complex developmental disorder (McDD) than to that for BPD. I have never been psychotic, but I do have some delusion-like thoughts.

Lastly, I have motor difficulties. I saw a physiatrist till I was about eight, but was too young to remember the diagnosis. I have a much weaker left side than right, although I recently found out that my grip strength is equal in both hands. The fact that I use my left hand much less could indicate mild hemineglect (lessened attention to one side of the body, usually left). I also have and have always had a lot weaker muscles than most people. I have however learned to live with that. I mean, what do you need to reach your toes for when in sitting position? I do have significant balance and coordination issues. MY gait is very wobbly. I recently learned that healthy people can climb stairs without even holding onto the railing. In my home, where the staircase has only one railing, I need to hold onto the railing with both hands and wobble sideways.

These are the limitations I can think of now. I have some others, but this post has been long enough. When I feel like it, I will answer the next question I remember, which was about adaptations for coping with your limitations.

In Between: Walking the Disability Line

This week, the prompt from mumturnedmom is “in between”. I immediately thought of my life as a disabled person. For many years, I’ve thought of it metaphorically as me walking a line between being good enough to be included in the non-disabled world and bad enough to deserve care.

I am multiply-disabled. I reside in an institution with 24-hour care. I am not even in the lowest care category for institutionalized people now that we’ve faced massive budget cuts and the lower care categories got deinstitutionalized.

Yet I am intellectually capable. I am stable enough not to need to be on a locked unit, and in fact am going to leave the institution in a few months. I will then fall in a lower care category, be entitled to less care. Yet I will be able to live a more normal life with my husband.

People often automatically assume that, if you have certain abilities, you are automatically less disabled than if you don’t have these abilities. For instance, I am always seen as “high-functioning” autistic because of my IQ. This is despite the fact that I’m in a similar care category to someone with an intellectual disability who has fewer behavioral challenges, sensory issues, or is more capable in daily living tasks than me.

People also often automatically assume that deinstitutionalization is appropriate only for those with few care needs, those who are “high-functioning” if you will. People don’t take into account that institutional life requires consumers to live in a group setting, which may not be possible for some.

I struggle with this view of disability as a continuum at best and a dichotomy at worst. It makes me walk the line between “high-functioning” and “low-functioning”, when in truth, I’m neither and I’m both and I’m in between.

I am “high-functioning” because of my IQ and my language skills. I am “low-functioning” because of my poor daily living skills. In most ways, however, I’m neither and I’m both and I’m in between depending on circumstances both within myself and in the environment. Yet I’m forced to choose.

And I refuse to choose. I want to be accepted as a human being with her own set of capabilities and difficulties. I refuse to choose between being “high-functioning” and being “low-functioning”, between being dependent and independent. After all, I am interdependent, like veryone else.

mumturnedmom

Being Powerful, Empowered, Mighty: Making My Needs Known

Today, I actually feel like writing about an experience I had this week, when I created my list of support needs and concerns for when I’m going to live with my husband. I particuarly wanted to write about my various ideas on day activities. Then again, I wanted my post to be prompt-based and have some direction and preferably be suited for a linky. Then I saw that this week’s prompt from mumturnedmom is “mighty”. Well, it was quite an empowering experience and a mighty experience at that. I don’t know whether “mighty” means the exact same as “powerful” or “empowered” and I believe these don’t even mean the same, but who cares? I am empowered, I am powerful, I am mighty, for I can make decisions on my care needs.

Seriously though, this is really empowering. After all, up until last week, I thought all responsibility for making this whole living with my husband thing work lay with me, but all control lay with my treatment team. Late last week, I was ranting about this in a Facebook group for people with borderline personality disorder and someone else said just the right things to get my butt moving. Or rather my fingers. She didn’t say much and I can hardly remember what she actually said, but I was inspired to finally start wrting down my support needs and concerns. My psychologist had been pushing me to do this, but I didn’t know how.

The first thing was about medication: who makes sure I get my meds on time, checks when I’ve run out and gets me a new supply from the pharmacy? Can I get a periodic med review with a psychiatrist? Then came concerns about my handling distress: whom to call and when f I’m in distress? What can I do myself? What needs to be done if I end up in a dangerous situation? Then came concerns about activities of daily living like making coffee (which I can do myself), preparing and serving myself food and suchlike. I didn’t have answers to many of these questions in all of these areas, except that i need to get supported day activities.

I E-mailed my list of concerns to my named nurse and was discussing day activities and recreation with her. My husband had made a few suggestions last week, but I was brainstorming with my named nurse too. I reasoned that I’d like to get my day activities from a developmental disability service provider rather than one for mental health, because they are usually more equipped to accommodate multiple disabilities and sensory needs.

Suddenly something popped up into my mind that I’d said to a nurse at my old institution a few years ago: that I’d like to try snoezelen. Snoezelen is a Dutch term with no proper English translation, but it means that a person with a developmental disability is allowed into a room which is equipped with materials to soothe and stimulate the senses. The sensory environment is completely controlable. It is also safe, like with soft walls and such, because most people who use this type of service have behavioral challenges.

I expected my nurse to ridicule me for proposing this, but she completely got me. My activiyt staff, whom I told the next day, said the institution has a snoezel room at the unit for people with intellectual disabilities and I may get approval to try it there. Of course, since this service is usually provided to people with intellectual disabilities, I may not be approved and if I do get approved, I may not be able to get along with the other clients. Well, screw that last one, which was holding my staff at the old institution back: I can hardly get along with most of my current fellow patients either.

Now I wrote my psychologist, but didn’t talk about the snoezelen idea, because I fear she will most definitely ridicule me. She seems so focused on my intelligence and my mental illness rather than my autism and sensory needs, after all. I did ask my named nurse to go with me to my next meeting with my psychologist so that she might advocate for me.

I also discussed my need for day acitivities in various Facebook groups for autism and other disabilities. Other ideas provided were yoga, swimming, trampolining (on a low trampoline) and gardening. My activity staff also said I need multiple activities that I can do during the week. If I end up swimming or doing yoga, I would like to do it at a day activity center, because then the instructors would be more accommodating than when I’d go to a regular gym or pool.

I feel much more positive, much more empowered than I did last week, even though many people or agencies may still get in the way. Like, my psychologist or social worker may refuse to refer me to a developmental disability service. Then again, my social worker said I need to do the meeting with the governnment people who decide on funding myself. These people might refuse to contract a developmental disability agency for me, or the agencies I have in mind might all turn me down. Still, if I don’s stand up for what I believe I need, I won’t definitely get things done my way.

mumturnedmom
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Success

One of last year’s NaBlPoMo prompts for January challenges us to write about a time we were particularly successful at achieving your goals. Since I always made long lists of new yer’s and birthday goals each year, far too long to keep up with, I never succeeded at keeping my resolutions. That doesn’t mean I’ve never been successful. Today, I’m sharing some ways in which I’ve been successful in life.

1. Education. It may’ve been over ten years ago, but I am still proud of the fact that I earned a hig level high school diploma from a mainstream school. I am prouder now that I know most people don’t attach expectations of my current functioning to it. I mean, when I had just fallen apart in 2007, at every phone call to my family, if I wasn’t moaning about my crisis state, or even if I was, I’d be asked when I was going to find myself a job. Now that it’s pretty much known that I won’t find myself a job anytime soon, or most likely anytime, I can celebrate my successful education as the achievement it was. It shows that, deep down, I have some perseverance. Sometimes I credit my parents for this, but it was I who wrote in my journal, a month into high school, that I hated it but regardless I wanted to complete this level of education.

2. Blogging. I still have a blog post in the works about why blindness sucks sometimes, and one of the reasons is I can’t seem to compete on equal footing with sighted people in the visually-driven world of social media. The thing is, I am still a pretty successful blogger, because I’ve been able to keep up a blog for nearly 2 1/2 years now (and four years with my old one). I also get a fair bit of interaction from my blog. Most of all, I do what I love and I love what I do with regards to blogging. I don’t get more joy (or traffic) from posts that have pictures in them than from those that don’t. I think, in a sense, of course I am not a great blogger in the bigger scheme of things, but I’m much more successful now than I was with my old blog.

3. Relationships. I often credit my husband for our successful marriage, but of course, it comes from both direcitons. I can say that one of only a few borderline personality disorder traits I don’t have is disloyalty in relationships. It feels a bit narcissistic to chalk this up as a success, because ideally no-one is unfaithful. I could go on to chalk up the whole fact of my marriage as a success, but that sounds even worse. Then again, this whole post could be seen as a bit self-centered. Let me just say my husband is hugely successful at keeping me as his wife, too. Oh crap, that sounds horrible.

4. Little things in life. I remember once getting an assignment for reading comprehension in like fourth grade about a kid who was in regular education and his brother, a special ed kid with intellectual disabilities. It was said that this brother was successful if he tore a piece of paper. This is of course ahuge stereotype of people with intellectual disabilities, but I mean it to illustrate that success can be found in little things. Like my blogging success, my success in many other areas is relative. I can make coffee with some help. I can put my dry laundry into the closet. I can clean my desk if reminded of it. These could be seen as just as useless to a non-disabled person as tearing a piece of paper. So what?

In this category also fall the daily successes that people without disabilities should also be celebrating. For example, I spent fifteen minutes on the elliptical today and have been exercising four out of six days this year so far. Celebrating this daily success can help us stay focused on the positive and reach our long-term goals. What have you been successful at today?

In Which I Describe My Views on Euthanasia

Over at Bad Cripple, William Peace wrote an interesting post on assisted suicide. On my old blog, I had an entire category of posts on end-of-life issues, but here, I never discussed my views on euthanasia and assisted suicide as far as I remember.

I live in the Netherlands, the world’s first country to legalize euthanasia. Just days ago, I wrote on my Dutch blog about a book about a GP’s daily practice, in which he openly discusses euthanasia. I also read this book a few years ago that exclusively diiscusses a GP’s take on this topic. The subtitle of the book calls this GP an “euthanasia physician”.

Unlike Peace, I am not principly opposed to euthanasia or assisted suicide. I do realize there are people who are not pressured at all to kill themselves but want to die anyway. This includes people with a diagnosed medical condition as well as people who are “suffering life”.

I do, however, recognize the explicit and implicit discrimination in euthanasia-related law and ethics. People with terminal cancer can be euthanized if they so desire without much further ado. Infants with severe birth defects can be euthanized shortly after birth if the parents want this. However, a case where a doctor assisted in the suicide of a person who was “suffering life”, led to criminal charges.

The law in the Netherlands says, among other things, that a person must experience unbearable and hopeless suffering to be considered eligible for euthanasia. It isn’t stated that this suffering should be because of a diangosed medical condition. However, “suffering” is such a subjective, vague concept. Everyone suffers sometimes. In a society that is dominated by currently non-disabled people, however, it is a common assumption that people with disabilities suffer more than those without them.

As I said, I for one do not principly oppose euthanasia. It’s a much better, less painful way to end your life than conventional suciide methods. I do not say I advocate suicide – it’s a very sad, tragic thing. I also do feel that people who are suicidal need to be helped in every way possible to overcome these feelings. The thing is, we cannot fully prevent suicide.

What I do oppose is doctors suggesting euthanasia. About ten years ago, there was a case of a child born with severe spina bifida whose doctor suggested euthanizing the child. The doctor happened to be my former neonatologist, the one who said in 1986 that they were just keeping me alive and not to interfere, and who said in 2004 that he wonders about some preemies what the heck he’s done keeping them alive. The parents, like Heather Kiln Lanier and her husband (linked to in Peace’s article), believed the doctor was pushing them to consent to euthanasia, which led to a formal complaint. The doctor defended himself in the media, saying it was “just a suggestion”. Well, I do understand doctros have some say in euthanasia because they have to provide the means, but I think they only should be countering patients’ wishes when they do not want to euthanize them. Research on preemies, after all, shows that doctors are more opposed to aggressive treatments and want fewer preemies to be allowed to live than parents.

Speaking of parents, I mean no offense to Heather Kiln Lanier, but parents should not have the right to decide to have their children euthanized. As I said, newborns in the Netherlands can be euthanized under the so-called Groningen Protocol. Babies and children under twelve cannot, or maybe now they can, because the last time I checked on this topic was about a year ago. In any case, doctors are advocating allowing euthanasia on children under twelve with parental consent. You could say that a newborn does not have anything to want as they don’t have self-awareness (this is philosopher Peter Singer’s argument for infanticide). You could not say the same of a child. They may not have the cognitive ability to make informed decisions on medical treatment, but the darn well know when their parents want to have them killed.

I am almost anti-parent when it comes to this. Thankfully, parents like Kiln Lanier allow me to see how much some parents can fight for their children’s right to a fullfilling life with as little discrimination against them as possible. Kiln Lanier definitely respects her daughter’s right to self-determination.

My view on euthanasia basically comes down to this: no-one can decide for another person that they suffer so much that they should be “allowed” to die. Doctors only have the means to providde euthanasia, so they should be allowed to refuse to do it when a patient asks for it. However, they should never suggest a person be euthanized.

This does mean that children and people with cognitive impairmetns usually won’t be able to get euthanized. So be it. I’d rather keep a few people alive against their will than risk killing people who don’t want it. And just for your information, peoople with even the most severe cognitive impairments do have self-awareness, so sod your Singerian arguments there.

We Are All Acceptable in God’s Eyes

Our society is extremely achievement-oriented. We are taught that we are acceptable because of what we have to offer the world. I am no exception. Though the people around me now accept that I have come out as I have, in the sense that they no longer deny it, I used to be taught that I somehow had to prove myself. Having no job, no college degree, no children and being dependent on benefits and long-term care, I often feel like I have failed as a human being.

Today, I read the book Real Families, Real Stories: Celebrating Life with Down Syndrome by Stephanie Sumulong. It is filled with short stories by parents and the occasional sibling of children and adults with Down Syndrome. What struck a chord with me is that each of these family members says their child is amazing. They don’t say so because their children’s achievements are magnificient in society’s eyes, but because as human beings these people are valued for who they are. I cringed soometimes at the umpteenth exclamation of how these people are gifts from God and have so much to offer. Then again, I realize that this is because I doubt my own worth.

Then I read a devotional which sends a conflicting message. It tells us how none of us are truly good enough in God’s eyes from the start, due to Adam and Eve’s original sin. Then it goes on to tell us that, if we accept Jesus as our savior, we are in fact all good enough. The devotion doesn’t go into what we need to achieve to be good enough in Jesus’ eyes. It doesn’t list any rites of passage to the Godly family. I realize that the author of the devotional may believe that certain morals are required to be saved, or that only certain people are predestined to be saved. I won’t go into this. For now, the author just states that, if you accept Jesus in your life, you are good enough in God’s eyes.

It is weird, but I find it comforting to know that all people are judged equal before the Lord. We all have a wickedness to us, whether we make big money or have three Ph.D.’s and five children or not. God recognizes this, but He also recognizes the good in everyone and He sent his son to make peace with us. As I said, people often believe that certain morals make us good enough in God’s eyes. I am not too conservative and therefore I don’t believe that we need to be something or achieve something to be accepted by God. Others might disagree. The point is, we all have some wickedness to us but it doesn’t matter to Jesus.

Equipping Godly Women

“Preemie Syndrome”

As I said in an earlier post, I was talking with my psychologist on Wednesday, and she mentioned not being sure I’m autistic after all. She said I might suffer from the effects of brain injury. Now my parents say it hasn’t even been proven that I had a brain bleed, but it is proven that I had hydrocephalus, which alone can cause brain damage.

I explained to my psychologist that we’d discussed this problem diagnosing some people on a list for parents of older preemis on which I’m one of a few preemie adults. On this list, we coined the term “preemie syndrome” and there were even speculations about what might cause it. For example, former preemies are known to have on average a much smaller orbitofrontal cortex (OFC) than full-term children. The OFC is a part of the forebrain speculated to pay a role in among other things obsessive-compulsive disorder. Now I have never had an MRI done so have no clue of the size of my OFC, and besides the whole point of “preemie syndrome” was that it needed to be as inclusive as possible to the disabilities experienced by former preemies.

So what is “preemie syndrome”? It is a constellation of often ill-explained difficulties and deficits in a former preemie. These include:


  • Motor deficits, often not diagnosed as cerebral palsy. Developmental coordination disorder, “clumsy child syndrome”, fine and gross motor delays. Hypotonia or hypertonia.

  • Cognitive impairments: learning disabilities or low IQ. Difficulty thinking logically or dealing with abstractions, literal-mindedness, inability to comprehend or follow simple directions, sometimes good rote memory, short-term memory loss. Test scores may be higher than actual functioning. Inconsistent performance.

  • Speech problems./LI>
  • Feeding problems: reflux and/or failure to thrive.

  • Dental problems: missing teeth, need for braces, high palate.

  • Low vision due to either retinopathy of prematurity (ROP) or cortical visual impairment.

  • Autism, Asperger’s Syndrome, Pervasive Developmental Disorder, “autistic traits”.

  • Social dysfunction: few or no friends, may not recognize social cues, oblivious to social space, low self-esteem.

  • Behavioral problems: immaturity, self-regulation problems, poor impulse control, intense need for order and routine, stereotypic (self-stimulatory) or self-injurious behaviours, disorganized behavior, inability to prioritize.

  • Attention deficit (hyperactivity) disorder (ADD/ADHD) or similar traits.

  • Sensory issues: sensory integration dysfunciton, sensitivity to noise, increased startle reaction, “tactile defensiveness”, strong aversion to certain tastes or textures.

  • Depression or bipolar disorder.

  • Anxiety disorders or obsessive-compulsive disorder (OCD). Peculiar phobias.

  • Reactive attachment disorder (RAD) or attachment issues.

  • Precocious puberty.


I didn’t randomly make this list up myself even though I have/had all traits except for speech problems and precocious puberty. I think Helen Harrison was the first to make a list, though I had this one on my website when it was still online.

Of course, if “preemie syndrome” were to become a recognized condition, it would still be very vague. It would require children to get an extensive evaluation to determine their actual weaknesses and strengths. The same, however, goes for diagnoses like brain injury that aren’t particularly helpful except in justifying the need for support.

I still feel that children and adults who struggle in life need to know their strengths and weaknesses and what might help them reach their potential. They may learn this from people who had similar experiences, be it premature birth or brain injury or whatever. They may also learn from people with similar strengths or weaknesses, such as in my case people with social communicative difficulties or “autistic traits”. With a diffuse concept like “preemie syndrome”, people need both. I do feel that preemies could also benefit from the sense of community in connecting with other former preemies. Unfortunately, as I’ve said before, not much support is out there for adult preemies.