Tag Archives: Internet

I Am (Not That) Introverted

Today for Friday Reflections, one of the prompts asks whether you’re an introvert or an extravert. An introvert is someone who derives their energy from within themselves. An extravert derives their energy from other people. Introverts are usually quieter, thinking before they act, whereas extraverts act on the fly. Introverts often prefer to have a few close frineds, while extraverts prefer a larger circle of acquaintances.

When doing personality tests online, like those based on the Myers-Briggs Type Indicator (MBTI), but even when doing more valid personality tests, I always score as strongly introverted. Indeed, I am a thinker rather than a doer, I can’t stand large group situations, and the closest to a friend I have is my husband.

Online on the other hand, I tend to be much more outgoing. I crave attention from others and am the type of person who has hundres of Facebook “friends” she’s never met or even only occasionally speaks to. I love large groups online, although group chats can be overwhelming. That’s probably more to do with the speed of conversation not being in line with my screen reader’s speed and my Braille reading skills.

What causes this distinction between my online and offline tendencies? It can’t be that I’m anonymous in the online world, because on Facebook, which I most frequently use, I am not. I wonder whether it has more to do with my expressive abilities in real life. In other words, could I be really more extraverted in real life if I had a better ability to communicate and process social situatiosn?

Could, indeed, introversion be the outward presentation of social ineptness? I am not so sure. I am clearly the passive type in the aloof/passive/active-but-odd typology of autism spectrum disorders, not the active-but-odd one. That is, not usually. Sometimes, as I have mentioned before, I am way too open about my private life. I don’t just mean my blog, although I’ve been in situations where I hurt people’s feelings or embarrassed myself with my openness while blogging too. I also mean that I just don’t realize who I can and can’t disclose things to in real life, too. Like I said, in high school I’d tell kids I’d just acquainted all my problems. I still am like this today to an extent.

I may not be as extremely introverted as I seem. Though I don’t handle large groups well, I do like some sorts of smalltalk. I’m not good at it, but I like it. I also think I might derive some of my energy from other people.

Now of course no-one is 100% introverted or extraverted, but on tests I usually score about 95% introverted. That may not be all that correct.

Everyday Gyaan

What Blogging Has Taught Me About Myself

The first writing prompt for August on the SITS Girls website is to write about what blogging has taught you about yourself. I have been blogging for years. I started an online diayr in 2002 and kept one on about every diary site that was around. In 2007, I transferred my DiaryLand diary, which had become partly a blog, to WordPress and started a real blog. My old blog died from inactivity in like 2011 and I had some blogs on and off for a few months until I started this one in August of 2013.

Blogging has taught me many things. It’s helped me improve my English and writing skills in general, and it’s helped me develop online connections and even a few friendships. Maybe it’s even helped me meet my husband, because he was reading my blog when he decided I was an interesting girl to meet. When I think, however, of something it has taught me about myself, I have to be really honest and say I have learned that, deep down, I crave attention.

In a way, this truth should’ve been crystal clear to me by early secondary school, when I allowed new “friends” to read parts of my journals. These friendships usually didn’t last long, in part probably because I was way too clingy. But I yearned for real friendships at the time.

This continued in the age of the Internet, when I exchanged E-mails with some people I’d met on Yahoo! groups and we exchanged URLs of our online diaries. DiaryLand didn’t have a comment system for free users and I had no clue about stats, so there was no way of knowing whether anyone actually read my diary unless they told me so. At that time, I really wanted people to read my diary, but not so I was a successful writer. I wanted to communicate things I couldn’t communicate face-to-face. I didn’t care how many people read my diary, if those people I cared about did.

That changed when I got a real blog in 2007. Now on WordPress I had a comment system and stats, so I could actually view how many people were reading my writings. I was, at the time, quite a successful blogger in my niche of disability rights bloggers. I didn’t read the big lifestyle and Mommy bloggers, so I didn’t care or even know that I was only a tiny blogger in the bigger scheme of things.

When I started my current blog in 2013, however, I knew about the bigger blogging world. I don’t even know how I found out, but I learned about blog support groups on Facebook, writing prompts and link parties. I decided I wanted to spread my wings and reach out to the bigger blogging world. At first, I only wanted to teach them about disability issues and autism in particular, but of course other people’s stats stared at me.

In absolute numbers, I’m more successful a blogger now than I was with my old blog. However, now I know that you can be even more successful. I also know that there are essentials of blogging I will never master, such as including images. And the sad truth is, this makes me feel inadequate.

After all, I crave attention. There is some research my husband mentioned that asks people whether they want a car when everyone else gets a car or they want a scooter when everyone else gets a bike. Most people choose the scooter and I’m no exception. In this sense, it’s sad that I got to venture out into the larger blogging world of people with bigger cars than mine, so to speak, even though I now have a car too. If I’d stayed in my little disability rights niche, I’d have had the proverbial scooter but at least could’ve measured up to everyone else.

In this sense, there are two things blogging has taught me about myself. Firstly, indeed, I crave attention. I smile when I get a new comment even when it’s from a blog support group. But the second thing I learned about myself is, and I only realize this now that i write this post, I’m more competitive than I thought I was.

Positives for the Week Starting February 23, 2015 #HappyDaysLinky

This week has been challenging. I’ve been very fatigued. This is nothing new as I’ve had terrible fatigue for a few months already. I also had a dizzy spell on Monday. Since my blood pressure was fine, there hasn’t been an obvious cause. I’m due to get blood drawn to check for hemoglobin and vitamin levels to see if either could explain the fatigue today.

On the old version of my Dutch blog, I used to post happy moments every now and then. Many other Dutch bloggers do this to focus on everyday enjoyment. I just found out that there’s a linky for this in English too. It’s the #HappyDaysLinky. So let me list some things that were good about this week.

1. Getting my braille display back. I got it back on Tuesday and was so relieved. I honestly hadn’t expected it back till later this week at the earliest. Since I hadn’t received a call from Freedom Scientific, the copany that manufactures them, I was expecting it to take much longer. I’m so glad the thing came back, so that I am now fully able to enjoy my online life again.

2. WiFi at the ward. Another thing that will enable me to enjoy my online life more, is that we got a WiFi connection at the psych unit I reside on. It won’t reach my room as the emitter is at the opposite end of the building, but I’ve been able to take my computer to the front room to enjoy the best signal. I don’t think I’ll be using the connection often except to download digital talking books, but it’s a good thing that it’s there.

3. Chocolate! I bought myself a box of chocolates on Monday and truly enjoyed them. Unfortunately, I ate a little too many and got sick, but that went away quickly.

4. Going for walks. The flu has stricken many of the nurses, so there’s usually fewer staff on my unit. That being said, I have been able to enjoy a few walks with the staff. I had a long walk with a substitute staff member on Sunday. Normaly staff can’t take patients on walks on week-ends because there is even fewer staffing, but apparently it was quiet enough on the ward that one could leave. Yesterday, I had to squeeze in art therapy between breakfast and going to the doctor for the fatigue. It was originally frustrating to have the art therapist arrive late, but I made up my mind that this was a great opportunity to go on a walk instead of doing actual art therapy. After all, by the time we’d reached the art therapy building, it’d almost be time to return to the unit for leaving for the doctor’s. I had a nice walk.

I am hoping next week will see at least as many happy moments. I heard the activity staff are introducing movement-focused activities in the day activity room across from my unit. I am looking forward to participating.

My goal for next week is to spend more me time. I hope to focus on writing and hope to also start yoga again. If not at day activities, then I hope to do it in my room.

What Katy Said

Night #WotW

It’s another sleepless night. Tonight, I’m thinking over whether to transfer the two domains I own, which are both registered with different providers, to one. A third one, that is, because both of my current providers have problems. The one I use for this blog is fine as long as I don’t need to change anything, but it requires a shitload of information if you haven’t memorized your password and you do want to make changes.

The one I use for my E-mail, I just came up with like four reasons to transfer it:

  1. I don’t need 7500MB of space and 75GB of data for just my E-mail and I don’t want to pay for it either. While the hosting isn’t terribly expensive for what they offer, the 7500MB/75GB package is their only product. I could pay a third of the price for a small package at where I want to move to.

  2. Either they or I screwed up the control panel. Not that I did anything to it, but half of the functions that are supposed to be in there, including installing applications, are hidden far away. Their application installer is rather unusual too, so I keep getting errors when trying to install apps. Could be because I’ve been playing with apps through FTP (because again the installer wouldn’t work) when I still used FTP. Which, by the way, I won’t be using again unless anyone can recommend a good FTP client that isn’t loaded with junkware. I just screwed up my computer with a used-to-be-trusted client. But I digress. The hosting provider I want to move to, has INstallatron as their installer, which is basically standard stuff. So if I want to build a site anyway, I could.

  3. I keep getting certification errors when trying to log in to DirectAdmin. This could be normal, but I don’t trust this.

  4. Most importantly for my current usage of this package, I hate their extensive spam filter. It’s a spam filter that sits before the server, so you don’t get to even see your spam messages if you want to. This has led to E-mail from several forums and social networking sites not getting through. I could disalble the thing as it isn’t a standard feature, but their basic spam filter is really hard to work. I don’t know of course whether another provider has a better spam filter. What I’d look for is something where you can just click a button on an E-mail message to mark it as spam and it learns this way.

Then this whole thought led me to thinking of self-hosting my blog too. I don’t know whether that’d be much harder than working WordPress.com, and in fact I have some experience self-hosting a blog that went pretty smoothly (though no-one ever visited and I only had it for like a week or two). Both the good thing and the bad thing is that it allows for more customization. It’s good because, if it works, I can set up more functionality and usability. It’s bad because, if it doesn’t work, I might (or more likely will) just screw up my blog. At least this way I will avoid getting “you should self-host” as an answer to all my WordPress questions in blogging groups. As a side note, even if I don’t end up choosing to self-host, I may want to move my domain name because at my current provider I pay like E22,50 a year whereas it’s E7,99 elsewhere.

I don’t know why these thoughts keep me awake. Last Wednesday, it was trying to find a good private journaling site after all software I tried, even the one that could’ve been great, failed to meet my expectations. I haven’t yet made up my mind on that one.

Technology isn’t the only thing keeping me up at night. Another thing is just a terribly melancholic mood. This evening, I joined some Dutch preemie parent groups. The members have been very supportive, but I keep rewriting my words just to make sure I don’t sound like I’m bashing my parents. Apparently I did with last Monday’s post. After writing that one, I also couldn’t sleep much at all.

As a result of both the technological and emotional navel-gazing, my circadian rythm has been pretty non-circadian lately. I end up sleeping at the weirdest of moments and at least staying up most nights. I am therefore choosing “night” as my word of the week.

The Reading Residence

My Ideal Social Networking Site

A few days ago, I came across a writing prompt for NaBloPoMo asking bloggers to describe their ideal social networking site. Suppose you got unlimited funds and a handful of tech guys to design it for you, what would it look like? Now I’ve actually been looking for a social networking site that is, well, ideal for me, so I have a pretty clear image of what I would want it to be like. Don’t worry: I don’t have money and I don’t have tech skills, so it’s unlikely to ever get off the ground.

My ideal social network would have a journaling/blogging feature as the centerpiece. The design of the journaling feature would be similar to the old LiveJournal or the current DreamWidth. I know that those who don’t use a screen reader probably don’t know what I mean, so here goes. I mean that all features of the journal, like recent entries, archive, profile page with interests and such, are easily accessible. No annoying mouseover stuff like the current LiveJournal seems to use. I mean, when you go to your or someone else’s profile page on LJ, you only see their bio, the people they have added as friends and the communities they’re members of. In order to see their interests, for example, you need to slide your mouse over the bio thingy, or something. In any case I haven’t figured out how to access interests, friends of, etc. On DreamWidth and the old LJ, these are/were easily viewable directly from a person’s profile page.

The journaling feature would, of course, incorporate full HTML editing. You’d be surprised most current online diary sites don’t have this feature. The entries would also be organizable by categories and tags as on WordPress.

Then, people would get a profile page. It would look similar to the LiveJournal or DreamWidth profile pages, with the person’s bio, external services such as Twitter, Facebook and Instagram, and a clickable list of interests which would connect users to other users. Searching by name, bio, interests, etc. would all be standard – on LJ, you need a paid account to search the directory.

People would also be able to create photo albums, from which they can link to their journal or which stand on their own. Again, this is similar to LiveJournal, only on LJ you need to pay for a “scrapbook”.

I’d also like to include groups similar to Facebook groups. In addition, I’d like users to be able to create writing circles. These are similar to what the Open Diary used to have: you post something to your own journal, but link it up with others writing on the same topic. These circles would, however, be moderated by users in a way much like link-ups are on blogs. The circle moderators would be able to create writing prompts for their circles.

Then, there’d be status updates and a personal messaging system as on Facebook. Lastly, I’d include a social bookmarking feature which is similar to Delicious. No images required like on Pinterest – one of the reasons I hate Pinterest is that I can’t pin my own blog posts as they don’t include images.

The entire social network would meet web accessibility standards. I was going to say “of course”, but then I realized my blog doesn’t meet these standards, so yeah. Privacy would also be important. Given that I would be allocated unlimited funds according to the prompt, there’d be no need for ads. If there are to be ads, they’re going to be non-personalized. People would register with a user name and the site would only display their full name (or a display name) on their profile if they choose so. On each item they post (journal entry, photo, etc) they’d be allowed to select the privacy options of “public (including search engines)”, “registered users”, “friends” or “private”. They’d also be able to set minimum privacy settings on their journal, photo collection or individual photo albums.

Unfortunately, the prompt didn’t say I’d be allocated a number of admins to watch that no illegal or otherwise inappropriate content is displayed on my platform. I’d hire these folks with my unlimited funds though. if I were to design this social networking site, after all, I’d want to sit on my butt after the platform had launched and just play with it. No moderation duties for me please.


This week, the spin cycle prompt is about secrets. I was one to easily spill secrets as a child. My sister always knew what she’d get for her birthday at least a week in advance, and this was not just due to the fact that there were noticeable patterns in my gift-giving – from a few years where I’d give her pavement chalk to a few years of colored markers to at last the inevitable cheap tween fiction when she was about ten to twelve. I think I didn’t quite understand the concept of secret-keeping if someone was going to find out about the “secret” soon enough anyway.

I also didn’t keep my own secrets. As a teen, I kept a journal faithfully and hoped my parents wouldn’t read it, but I spilled bits of it to anyone who remotely resembled my concept of a friend. I know that deep down, I wanted people to know the darkness of my experiences. I was extremely naive, yet also mistrusting of people like my own parents.

This discrepancy grew when the Internet came into my life when I was sixteen. I spilled my deepest secrets to my online diary, but when my parents asked me how I was, I responded with the usual “fine” or a grunt. My parents had a proxy server through which we accessed the Internet, and I now know they at least had the opportunity to log my Internet activity. I think they actually may’ve done so, as one day when I’d had an Internet connection for about six months, my father offhandly remarked that all I looked at were disability sites or storytelling sites (the story site being about disability, too, but he couldn’t tell that by its name).

With regard to other people’s secrets, I don’t “just know” when I shouldn’t say something. This has led to a number of awkward situations, from my spilling personal details about my relationship (and hence, my husban’ds life) to the Internet, to my telling my parents my husband’s jokes that mock my parents’ political persuasion. I truly have to be explicitly told that something is private or that I need to keep it to myself.

There are several factors that contribute to my inability to keep secrets. First, there is the idea, which I’ve read is common in autistics, that other people know anyway. I don’t literally think that, as Stephen M. Edelson pointed it, other people can read my thoughts, but the idea is at the back of my mind nonetheless. Related to this idea is the inability to see that, what I know, not everyone else should necessarily know too. Lastly, there is a reason why I particularly spill secrets to the Internet. I think I may not fully realize that those on the other end of the Interwebs, are actually real people. That doesn’t mean I don’t develop online relationships or that I’m not affected by what other people put online. However, it is still hard for me to grasp that screen names (or even real names on Facebook) correspond to actual, real people, even those I may encounter in real life.

Ways to Unwind #TuesdayTen

Yesterday, my psychologist, the staff and I had a meeting to discuss how we could better cooperate. It was a good meeting, but still I was a bit anxious beforehand. We discussed ways in which we could keep the lines of communication open instead of getting stuck on negativity, and how the staff could help me prevent piling up stress. I do have a crisis prevention plan, but it is pretty useless once I’m already in the dark orange or red state. So preventing me from getting this stressed is key.

Today’s Tuesday Ten theme comes in a timely manner. It is Nationnal Hammock Day (in the U.S.). Having lay in a hammock a handful times on vacation, I can totally attest to its relaxing effects. Then again, we don’t have one ready here to lie in when I’m stressed, so I have to come up with other ways to relax. Here are ten:

  1. Writing. Writing has always been an activity I used to unwind. I was an avid storywriter in my teens, but unfortunately lost that skill. Since I got an Internet connection, I started writing for a wider audience. It can be stressful when I “have to” write a blog post, but it can be deeply relaxing when I write from my muse. I also continued writing for just me until I few years back, and really need to start the offline journal again.

  2. Some crafts. Like with writing, crafting can be frustrating. However, crafts that I find easy such as stringing beads on a wire or basic looming are quite a good way to focus my attention on something else while not needing so much concentration that it becomes frustrating.

  3. Fidgeting. I used to be reprimanded a lot for playing with my hair or fidgeting in other ways. I’ve basically stopped caring and my parents are not here to dictate that I cannot fidget anyway. I love playing with my handmde jewelry.

  4. Coffee. Okay, I know that caffeine isn’t supposed to be good when you want to relax, but I consider drinking a nice cuppa quite relaxing.

  5. Herbal tea. For a bit of balance when I’ve drunk too much coffee. Particularly chamomile tea has relaxing properties, but I usually blend different herbs because the act of brewing my own tea is relaxing in itself.

  6. Music. I don’t tend to listen to music while doing other things, such as writing. When I do listen to music, I usually “dance” to it as I listen to the lyrics. I find this quite a help in thinking without getting stressed.

  7. Talking it out. I find that talking about what makes me stressed helps when I worry a lot. I also find that a chat about something that interests me also helps me refocus my attention.

  8. Taking a shower or bath. I love bathing, and can’t fathom that I’ve never used the bathtub on my ward in over a year of being here. A hot shower (except when it’s hot outside like now) usually does the trick too.

  9. The Internet. I love to unwind online. I’m not sure whether it’s a blessing or a curse that most online games are not accessible to my screen reader. I however like playing mindless word games on Internet forums, too.

  10. Spending time outside. I practically cannot take walks outside on my own, but the nurses sometimes take me on walks. We also have a nice garden that I like to sit in when the weather is nice.

The Golden Spoons

The As of My Life

My Interet access got cut off last week due to data overuse. I have a mobile USB modem, similar to a cellphone Internet connection, and until recently had virtually unlimited data use. That was changed to 1GB/month without my knowledge (I’d forgotten to issue an address change). I used this up, plus E100,- in extra data use, within three days and was cut off. Today is the start of a new month, so I have an Internet connection agian, though I have to be very careful not to overuse this time. I obviously switched ISPs, but the new modem won’t be delivered till sometime in the coming week. This is the reason I’ve hardly been online – I published Wednesday’s post while at my husband’s -, and I’ve not been able to catch up with other bloggers much.

You’d think I’d have a ton to write about with a week of Internet-free time. Well, since I get most of my inspiration online, I don’t. Today, I am therefore writing up the ABCs of my life, or at least the As. I got this idea from a post I came across while browsing PoCoLo, a general interest linky. I go with the letter A only because I can’t be motivated to think of something for every letter, and I don’t intend to post a follow-up.

Acceptance: this is a tough one. I strive for and advocate for acceptance of myself, autistics, disabled people in general a lot, but do I accept myself? I honestly don’t think so.

Adjustment: related to acceptance. Adjustment is a constant process, because life constantly changes. You can adjust without accepting the new life situation.

Advocacy: what I do a lot on my blog, but fail to do in daily life. My husband has pushed me to stick up for myself in regards to the difficulties I’m facing in the institution, but I don’t. I fear that I’ll lose my support if I do.

Alters: I still feel them, though not as much as I used to. Maybe they were fake all along. Maybe they’ve gone in hiding, being told they’re fake so much over the past year. I don’t know.

America: not really relevant anymore, but I dreamt of living there when I was a teen. Still sometimes wish I could live in the U.S., but I know I never will.

Autism: that one is obvious, though people around me still like to question it. In this sense I can totally relate to Joanna, who inspired me to write this post.

Autonomy: what I ultimatley strive for. Autonomy means being able to direct your own life. This is not the same as not needing support or care. You can be perfectly autonomous while needing lots of help. What it means is making your own life choices and taking responsibility for them. I really wish the care system, with its mouthful of deinstitutionalization and self-reliance, would help clients on the road to true autonomy.


A few days ago, I read a post on grief as it applies to parents of special needs children. I am a disabled person myself, not a parent, but I can relate to a lot of what is written in this post.

Having been born with most of my disabilities, I didn’t have to face the sudden loss of a normal life, as people with acquired disabilities do. I did have to face the loss of the remaining sight I had growing up, and this has been tough, but I’ve never been fully sighted. I’ve also never been non-autistic, but in this light, I can relate to the issues faced by parents getting a new diagnosis for their child, since I wasn’t diagnosed till adulthood.

Grief never really ends. You can not feel it for a while, but something can always bring you back to the grieving place. For example, I thought I’d accepted my blindness after I had lost my last bit of vision when I was seventeen. I grieved this loss for a while, but then I picked up the pieces again and thought I was fine. But I wasn’t. When, in 2013, I had surgery that could’ve restored my vision but didn’t, I was brought back to the grieving place all over again. I knew this could happen, as I knew the results of surgery were uncertain, but still, it was tough.

Sometimes they’re the bigger life events that take you back to the grieving place. Sometimes, it’s an anniversary or special event. For example, I’m taken back to the grieving place now that it’s high school graduation time. I did graduate high school, but never succeeded beyond that and never had a good high school experience anyway. I also grieve when my relatives are talking about their college endeavors, because I realize I’ll likely never even get close to finishing college.

Sometimes, they’re the tiny nuisances of life that make me grieve. The Internet is becoming more and more visually-oriented, and this makes it tougher for me to get by. When I see a great crafting idea but can’t seem to reproduce it because I can’t see the pictures, I grieve. When I join a blogging community and 99% of the members are Moms, I grieve. And as for real life, when the weather is beautiful outside but I can’t go for a walk because the staff don’t have time to accompany me, I grieve.

Some of my grief involves current inabilities, like the inability to go for a walk whenever I want to or the inability to see pictures. Some grief involves the loss of dreams, like the dreams of a college degree or a child. Some grief involves the loss of freedom and independence. Grief, in short, comes in many forms and shapes. How to deal with it? I wish I knew.

Disability and Childlessness: It’s Complicated

I am disabled. I am childless. For a long while, I identified as childless by choice. In a way, it is a choice, because I do not experience reproductive problems that I know of. In another way, it’s not a choice, because I would’ve wanted to be a parent. I’m not “childfree”. I am disabled, and this has influenced my decision to remain childless. That doesn’t make it not a decision, but it makes the decision tougher than had I truly been childfree.

On Musings of an Aspie, there’s a post on honoring your choices as an autistic woman (or man). It is a postscript to the autistic motherhood series on the Autism Women’s Network. The post concludes that older autistic parents have a responsibility to share what they’ve learned with the younger generation of autistics. This, in my opinion, goes for autistic childless people too. As autistics, we often feel left out, and it’s important to have people whose experiences we can relate to who are older than us and can share with us what they’ve learned. Likewise, we need to be mentoring the even younger generations.

I find it extremely hard to connect to people with whom I have enough in common that we can share our knwoledge and experiences and support each other this way. This may be because I have multiple disabilities. The Internet has opened a world for me, but when, with this current blog, I began to spread my wings outside of the disability blogosphere, it also amplified my differences. It may be just me, but I see Mom bloggers everywhere.

Childlessness, like disability, is a minority status. And now that childlessness is no longer the only way for disabled women, it adds up to someone’s otherness. I’m not saying that childlessness should be the norm again for disabled women. What I do want to say is that it’s still a reality for a lot of disabled women (and men), and that it’s often still a painful reality that is complicated by prejudice and stimma both surrounding disability and childlessness. I do understand that the assumption that disabled people are childless by default, needs to be challenged, but this assumption should not be replaced with additional stigma for the person who finds their disability actually does make it impossible for them to become a parent.