Monthly Archives: October 2013

Disability and Quality of Life

A few weeks ago, I read a post on gratitude for people with disabilities. It made me think: are disabled people naturally presumed to be unhappy? And if so, do we have an obligation to put up a shiny happy face to make the world know we’re not unhappy? I think indeed we are often thought of as necessarily unhappy. While it would be great if we could show some gratitude, for ourselves and others, this is unrelated to disability. Everyone can be a pain in the ass when they’re constantly grumpy.

I am a relatively unhappy and a significantly disabled person. I do not feel these two necessarily go together. And what if they do? I sometimes do feel crappy because of frustrations related to my disability. Does this make me a pitiful crip? I don’t think so.

Let’s face it: life throws challenges at all of us. It’s not like living with a disability entitles us to be grumpy all the time. On the other hand, we are not required to put up the shiny face at all times either just to show the world that our disability is not a harrowing fate.

I remember when I was aroudn fifteen participating in a preemie folloow-up study. Part of it involved a quality-of-life questionnaire. I was honest that my quality of life was pretty crap, but made a big deal out of making clear this was not due to my disability. After all, I didn’t want the doctors to think that blindness is somemthing worse than death, and, let’s be real, neonatal specialists do use quality of life to base ethical decisions about life or death of future preemies on.

Are we, as disabled people, responsible for making the world believe that disability is not a big deal? I don’t think so. To give an example, when in like 2011 two deafblind twins were euthanized in Belgium, the National Federation of the Blind (U.S) responded by playing the Helen Keller card. See, she was a major achiever and was deafblind, so deafblindness is no reason to have a miserable life. Maybe so, and I agree that a disability in itself is not necessarily a reason for suicide, assisted or not. However, the NFB did not know the specific circcumstances of these people, and neither do I. Both sides of the euthanasia debate made the case of the deafblind twins about deafblindness. What if deafblindness was only used as an excuse for the twins to get assisted suicide, while the real reason was subjective suffering that may or may not have been related to their disability?

Since euthanasia was legalized in the Netherlands in the early 2000s, the definition of unbearable suffering, which is required for euthanasia, has undergone significant inflation. Formerly, euthanasia and assisted suicide were only lejal on terminal patients, while just today, a man who euthanized his aging but non-disabled wife was found guilty but not sentenced. Maybe there’s a difference in that the man in today’s case was not a doctor, but people constantly make it about the wife’s non-disabled status. Let me make one point: if you allow euthanasia or assisted suicide but only on those with a disability, that’s discrimination. It’s not like non-disabled people can’t suffer. As sort of an inverted argument, are non-disabled people required to live in misery just because they don’t have a disability?

Two Bracelets

Lately I’ve been enjoying polymer clay and particularly have been making beads out of it. I also have bought a number of jewelry-making supplies, such as gemstone and glass beads, charms and wire. Here are my first two bracelets.

This one my husband nicknaemd the Ado The Hague bracelet after a Dutch football club. I think the football club’s colors are yellow and green, while the bracelet truly has golden glitters in it, but I’m not sure that it shows on the picture. I used green and golden glitter Fimo Effect and rolled two rolls into what I believe to be a jelly roll. Then I cut beads out of that, then had them lie around forever after baking before I strung them together on elastic wire. I am soon going to make a similar one in different colors for a nurse here.

This one got nicknamed the Christmass bracelet for its green stars. They are made out of turquoise I believe. The golden beads are glass beads. I strung these onto a metal wire and attached the clasp. I got some help with that bit, but must say I can do it mostly independently now.

Disability and Double Standards

A few days ago, Ellen of Love That Max wrote a post on double standards in the parenting of special needs children. As an example, she said that she repeats the same phrases over and over again if Max asks her to, but tells Max’s sister to stop nagging about the same topic. Max clearly showed that he was learning the skill Ellen tried to teach his sister but not yet him, ie. the knwoledge that the world does not revolve around him. Nonetheless, some commenters got to talking to Ellen like she was indulging on Max and in fact, Nisha, herself a disabled blogger, said Ellen needs to start treating Max like a neurotypcal child.

Nisha has a good point when she says that the world will not indulge on Max when he’s big. Max, too, needs to learn the knowledge that the world does not revolve around him. However, as Ellen said in the original post, she did unconsciously teach him this by repeating his preferred phrase with some “stop talkign about that” mixed in and in an irritated tone of voice. Maybe the repeating of the phrase was one of the things which taught Max to pay attention to what was being said, ie. that he needed to stop talking about this.

What annoyed me in Nisha’s comment, was the idea that disabled people need to be treated like they aren’t disabled. As I said, I totally agree that they need to learn basic lessons of social behavior, but I do not see why this needs to be done the same way that you would teach a neurotypical child. If repeating a phrase helps a neurodiverse child learn, what’s wrong with using that phrase in parenting? Ellen might in fact learn to use the phrase in different intonations and variations to teach Max skills like awareness of others.

My point is, when you use different rules for different children (whether they have disabilities or not), you are not necessarily indulging on them. You are just getting on their level and teaching them to move up from there. Expecting a neurodiverse child to behave like a neurotypical, is not realistic. It will not make their neurodiversity go away. In my own case, it just set me up for constant failure.

Of course, you need to have a positive attitude about any child’s or adult’s abilities. They need to become the best they they can be. That, however, is not the most neurotypical, but the most able. Let’s make a comparison: when I still had some sight, one could’ve said that I needed to be treated like a sighted person and expected to use my vision as much as possible. That is not encouraging me to be the best me I could be. Rather teaching me brailel and cane travel are. Similarly, autistic or otherwise neurodiverse people need to learn some basic skills, but they can be taught these skills in an alternative way. Look at the bigger picture of the knowledge that the world does not revolve around you, rather than at the tiny piece about the use of repetitive phrases.

Sandy Card

I am extremely tired due to a combination of a lengthy eye doctor visit – it consisted mostly of waiting -, physical pain, and overload due to a very hectic fire drill. I might write about the eye doc visit tomorrow or some other time, or I might not, but right now I just have time for a quickie. As promised, therefore, here is my colored sand card. It is a simple Christmas tree, which I cut out of double-sided sticky foil using the smaller one of the lovely Marianne Design dies. I used gold-colored Sandy Art sand. The stars that fly over the Christmas tree are from my stash. The green cardstock base comes from a pack I bought at the supermarket for much less than it’d cost at the craft store.

Treatment for Its Own Sake

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

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

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

More Crafting, This Time for Christmas

Thanks lovely readers for all the nice coments on yesterday’s post and thanks for the follows. If you’ve only visited yesterday’s post, I want you to know this is more of a general blog with an assortment of posts, some of which can get pretty involved. However, I’m loving craft blogging again so here are a couple more cards. Both of these have a 3D effect to them. The first was done using die cuts from a die cut pack, and the second was done using a lovely set of Christmas tree dies by Marianne Design. I am not able to use regular cut-outs, but these were simple enough so that I could build up the image.

Edit: oops, discovered I already posted that first card earlier. Sorry for anyone who’s seen it twice.

Crafty Endeavors

I used to have a crafting blog that I posted regularly to. However, as time progressed and my cardmaking did not, I lost interest in posting pretty simple, childish-looking cards. I still made at least one per week for a Christmas card challenge, but only so that I wouldn’t be kicked out of the group that ran it. Since I moved to my current institution in June, also, my individual art therapy sotpped, and the group I attend is pretty demanding of independence. I want to transfer to a less demanding group, but have not yet been able to speak to my named nurse on this.

I’ve been looking for crafts that didn’t require sight, and on a Facebook group for crafters with chronic illness, someone mentioned quilling. So I bought a quilling starter kit a few weeks ago and have been playing with it. First, I designed – or rather, didn’t design – a random pattern. I didn’t take note of or get feedback on the colors or shapes.

I decided not to finish the random pattern because it really felt like a waste of paper. Last Tuesday, it popped into my mind to make an actual design, and the simplest would be to make a card border. I used purple, pink, green and blue quilling paper. I only found out as I was finishing the project yesterday how to make the holes in the coils smaller. I use the needle tool because I can’t manage to put the paper into the slot of the slotted tool. I’m not sure how to make the holes as small as they are on the few ovals that one of my staff made using the slotted tool, but overall, I’m quite content with this card. The cardstock and the center flower are from my stash.

I have been trying out a few other crafts, like polymer clay, with which I made a number of jelly roll beads. I have not yet been able to make them into a bracelet or necklace, because some essential jewelry-making supplies have not yet arrived.

I also just today made a card using colored sand, but I’ll have to wait to show that one till my husband can take a pic, because I don’t want to damage the surface of my scanner with the sand.

"Use Your Words."

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

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

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

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

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

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

Need Care? Be a Pain in the Neck

Over the past couple of weeks, I’ve been pretty fearful of losing my autism diagnosis now that the DID/PTSD was changed to BPD. I’ve had a number of arguments with various people over whether certain aspects of me, like my inability to live on y own or with little support, are due to autism or due to BPD. The answer matters in some way, because, as I said a couple of weeks ago, if it’s BPD, it means it can be treated with cognitive therapy.

Now I have always been very adamant that my inability to live on my own is due to autistic organizing and processing difficulties. To the person believing the inability is due to BPD, this comes across as defensiveness: I’m just scared to take responsibility for my own life and I use autism as an excuse.

Unfortunately with this comes the idea that this fear will go away if I just get enough kicks in the butt. I know that flooding is used in anxiety treatment, but is it truly the most appropriate way of treating the fear of taking responsibility for your own life, assuming this is indeed what is going on?

I’ve often wondered and worried how people are going to tell that they are wrong in assuming that all my inabilities (except for those that are obviously due to blindness) are just insecurities. I mean, the only time I succesfully signaled that I needed more support, in 2007, I did so in a very much borderline way, ie. by threatening suicide in a public place. It is easy to say that this is my BPD acting up and I need to be ignored.

Of course, the currently mentally healthy person would say, why don’t you just ask for more help in an appropriate way? Now I will tell you something about the way the care system works here: depression, anxiety or other emotinal problems are no grounds for care. Only behavioral problems are. In other words, if you need help, you’ve got to be a pain in the ass. Now please untangle this reality for me: if you’re still well-behaved enough to signal you need help without destructive actions, you’re obviously healthy enough not to need this help. Now if that isn’t reinforcing behavior problems, I don’t know what is.

On Appearing Autistic: Theory of Mind

Tonight, I was discussing with a nurse an autism support meeting I went to last week. We got to talking about how autistic the participants appeared, and the nurse mentioned that she had a family member who works at one of the country’s largest autism facilities, which happens to be in my town. The nurse talked about how the autistics who go there are much more obviously autistic than I am.

I have been diagnosed with autism by three different diagnosticians in three different evaluations between early 2007 and late 2010. The last two, who did the most extensive evaluations, both had their reservations about the diagnosis. There were roughly two reasons for this: 1. that I appear to have good theory of mind, and 2. that they weren’t sure which of my oddities were due to autism and which were due to blindness or other factors. I want to talk about the first now.

I am pretty sure I mentioned this before, but theory of mind is not the same as prosocial behavior. People who are antisocial, except for maybe the worst of psychopaths, have good theory of mind and use it to their advantage. I honestly have pretty bad theory of mind, to the point where I fail the more compliciated versions of the Sally and Anne test. Theory of mind is the ability to shift your focus from your own cognitions and emotions onto anoother person’s. In the Sally and Anne test, Anne has a toy in her basket. She leaves the room and Sally moves the toy to her own basket. Then Anne returns and the person being assessed is asked to say where Anne would be looking for the toy. The correct answer would be Anne’s own basket because it was here when she left, but people with poor theory of mind who have seen Sally move the toy, will say Anne will look into Sally’s basket. Note that the Sally and Anne test in this version is passed by most typically-developing four-year-olds, and real-life theory of mind is much more complex.

I, for one, appear to have good theory of mind, because I am generally pretty sociable and also because I exhibit a good deal of prosocial behavior. I was told by my former therapist that I had good theory of mind because I apologized in about every E-mail I wrote to her in case she didn’t want to receive E-mails from me. This, however, is not theory of mind. I have no clue when it is and isn’t appropriate to write your therapist out of session and so apologize just in case. Inndeed, when I am rude, I pretty often forget to apologize if I even realize I am rude. Because I don’t talk out of turn and say rude things 99% of the time, doesn’t mean I know when it’s appropriate to talk and what to say.

In addition, I have above-average verbal intelligence, which allows me to reason through social situations pretty well. I used to make my own Social Stories in high school, but still was seen as quite a rude person. Now that I’m in my twenties, I’ve learned to adapt and become less in your face unless I’m agitated. While this could connote a better theory of mind – after all, I can reason through social situations to some extent -, it is not nearly enough for what is required in everyday social interactions.

I at one point read an article by I believe Tony Attwood on Asperger’s in females, in which it was said that Asperger’s is often not recognized in females because male Aspies tend to be active but odd, ie. talking out of turn, talking on and on about one subject, etc. while female Aspies are often passive, ie. only interacting when encouraged to. I reckon that more passive Aspies tend to aslo be more cautious about their social interactions. This could easily lead to them not appearing as Aspie because they aren’t saying inappropriate things.

Please remember that autism is not a behavior disorder. It’s a neurodevelopmental disorder that impacts on various aspects of functioning, theory of mind being just one. Even if a person has relatively good theory of mind, that doesn’t mean they don’t have the processing dyfunction that is thought to cause autism.