I Got Approved for Long-Term Care!

Last Monday, I was so discouraged that I wrote a letter to myself motivating myself to keep going at least till 2021. I was in the process of applying for long-term care and I wasn’t expecting my funding to be approved until 2021. After all, my original application early this year had been denied. My support coordinator appealed for me, but I wasn’t expecting much out of it. The reason I had my hopes focused on 2021 is that by then, mental illness will no longer be excluded as a ground for long-term care, meaning that those with lifelong mental health conditions preventing them from living independently, will qualify.

Of course, I’m not just mentally ill, even if you see autism as a mental health issue (which it isn’t in my opinion). I am blind and have mild cerebral palsy too. I met some people at the CP conference who qualify for long-term care for just CP, even if it’s as mild as mine is. Then again, the rules have gotten stricter and those who lived in group homes or supported housing prior to 2015, qualify much more easily than those who didn’t, like myself. In this sense, my long psychiatric hospitalization works against me.

Two weeks ago, the lawyer in charge of my appeal with the funding agency (I didn’t have my own lawyer) said I probably didn’t qualify for long-term care. The reasons were complicated. From one person, I heard that the physician in charge of making medical recommendations was willing to recommend long-term care but was restricted by law because of my history of mental illness. From another, I heard that I couldn’t get long-term care because the physician couldn’t decide whether my primary disability is blindness, cerebral palsy or autism, so they decided not to qualify me at all. That’s rather weird, because they almost made it look like I would qualify with my exact limitations if only I didn’t have a psychiatric diagnosis on file.

I don’t know how they eventually managed to do it, but late Tuesday afternoon, the lawyer called my support coordinator to inform her I had been approved after all. I am so happy! I qualify based on blindness as my primary disability.

Now I feel weird. I know I should be happy and I am, but I feel also disconnected from myself. In a way, being approved for long-term care is an ending, in that I’ll (unless the laws change) never have to prove that I need 24-hour care again. On the other hand, it’s a beginning, enabling me to start looking for a group home. Because I qualify based on blindness, we may or may not be able to get me into a group home with my current care agency. After all, they primarily serve those with intellecctual disabilities. I prefer this agency though, so we may be looking into tweaking my care profile. If I can’t live with this agency, we’ll check out the two blindness agencies here in the Netherlands. One has housing about an hour’s drive from my current home, while the other agency’s housing is 90 minutes to two hours away. My husband said though to prioritize suitability of the group home rather than proximity to our current home.

I feel pretty distressed about telling my parents. They will be visiting me for my birthday at the end of the month, but I don’t know how far things will have moved along then. I don’t really know when to tell them. It’s okay though, I tell myself. I don’t need their approval.

Travel: My Most Enjoyable Vacation #AtoZChallenge

Welcome to day 20 in the #AtoZChallenge. I am feeling a bit frustrated with myself at the moment and as a result not as inspired to write. I hope this mood will lift while I’m in the process of writing this post. Today’s topic is travel. I was inspired to write about this by a nightmare I had last night, which was about a summer camp I attended in Russia in 2000. I don’t want to revisit that right now, so will instead be writing about my most enjoyable vacation.

This was, incidentally, also a summer camp. I attended the International Computer Camp for blind and visually impaired students in England in 2002. Because of my negative experiences with the summer camp in Russia, I had my reservations about going to this camp. Of course, this time I wouldn’t be the only blind person, but I still worried that I wouldn’t fit in.

The computer camp was held at a college for the blind in Loughborough, a town in the East Midlands. For this reason, we also took a trip to the West Midlands to see the Black Country museum or that’s what I remember it being called. This was something about the industrialization of England, but I wasn’t able to follow it much.

For most days, we had two workshops we could attend on computers and technology. I at the time had just discovered the Internet and was excited to learn what cool tech there was out there. I attended some workshops on word processing, but also on music and audio. I was also lucky enough to be on the editorial staff for the camp newspaper. I loved this and this was probably one reason I later began an online diary.

The staff worked at various disability agencies in their respective countries. One person I remember well worked at the University of Karlsruhe, Germany. He helped visually impaired students find their way through college. He taught a workshop on studying abroad, though it was more of a general survival skills for blind students workshop. This was perhaps the best experience I had there. It helped me realize that I wasn’t the only blind person out there trying to follow her dreams.

This was also the general message I took home from the camp: I am not alone. I met lots of blind and visually impaired young people from across Europe who were facing the same issues I was.

I returned to the international computer camp in 2003, this time in Switzerland. I liked that a little less, possibly because the Dutch staff who attended this time were a bit more pushy about my independence. I still enjoyed it though.

Independence Training: My Journey Through Rehabilitation Programs #AtoZChallenge

Welcome to day nine in the #AtoZChallenge. I wasn’t sure what to write about till literally minutes ago. My support coordinator was in touch with the long-term care funding agency today. I still can’t disclose details, but it brought back memories of all the rehabilitation and training programs I’ve been in. Let me share.

I didn’t get a lot in the way of independence training while at the school for the blind, but I got some. It wasn’t efffective though. I don’t know why, but part of the reason was probably my parents constantly arguing with the school on what was important for me to learn. Another reason was my struggle with generalizing skills I’d learned at school into other settings. Once I went to mainstream secondary school, I didn’t get any independence training at all. I was pretty bad at life skills by the time I graduated high school.

I decided not to go straight to university after high school. Instead, I chose to go into the country’s only residential rehabilitation center for the blind’s basic program. I learned some skills, but still had trouble making use of them in the real world.

The same happened when I went into an independence training home. At first, I thought highly of myself and wanted to do things independently I really couldn’t. My plan was to get training for eight months and then leave for university. Those eight months became eighteen and then I was basically made to go to university.

I tried a ton of independence training while hospitalized on the psych unit too. It didn’t work. Whenever I tried to do something independently, such as clean or travel using my white cane, I struggled greatly. I didn’t fully realize this, not even at the long-term care assessment last January, but I really overestimated myself. My husband can attest to that. He’s had to get me out of trouble many times.

Why I struggle so much, no-one has been fully able to figure out. It’s probably a combination of my multiple disabilities (blindness and cerebral palsy) and my emotionally low functioning level.

It’s been recommended that I get more independence training. Maybe, after I complete dialectical behavior therapy for my emotion regulation issues, I’ll not feel as frustrated with myself and be more able to learn. I don’t think this is going to solve the problem though, since doing something with someone present, isn’t the same as doing something on your own.

Blindness: Dealing With Vision Loss #AtoZChallenge

Welcome to day two in the #AtoZChallenge. Today, I am going to tell you about my most obvious disability: blindness.

I was born prematurely. When premature babies could first be kept alive in incubators in the 1940s and 1950s, thousands of children became blind due to a condition first known as retrolental fibroplasia (RLF). The first known cause of RLF was excesss oxygen, as these babies were kept alive because of ventilators and no-one knew that too much oxygen could do harm too. Once doctors and nurses started being more careful with oxygen, the number of RLF cases decreased. However, still, babies develop this condition until today. The name of the condition got changed sometime in the 1970s to retinopathy of prematurity (ROP).

I was born in 1986. At the time, the first sight-saving treatments for ROP had become available. However, early detection is still key to timely intervention. At the time of my neonatal intensive care stay, the pediatric ophthalmologist specializing in ROP was unavailable, so my ROP remained undetected until it’d reached an advanced stage. I did have sight-saving surgery when I was about five-months-old, but I still had only about 20/400 vision left in my better (left) eye.

The bad thing about ROP is that, even though it isn’t in itself degenerative once the baby is out of the NICU, it can lead to further complications throughout life. These can then lead to further vision loss. I developed a cataract on my right eye at age seven. I got it removed, but couldn’t get a lens implant at the time. I could’ve gotten one when I was older, but by this time, my vision had already further deteriorated.

At age eight, when I had only “hand motion” vision (which corresponds to about 20/1000) in my better eye, my parents and the doctors decided to give up on further treatment. I didn’t like it, but I had no say in the matter.

From that point on, i was treated like I was totally blind. I wasn’t, but to a sighted person, 20/1000 looks like not worth it.

At age twelve, I suffered a retinal detachment in my right eye. From that point on, I was blind apart from slight light perception in that eye. I also suffered decreased vision in my left eye, though I considered myself having some minimal functional vision until I was around 17.

Now, I measure as having light perception in my left eye only and no vision in my right eye at all. Light perception is the ability to discern whether it’s dark or light in a room. For example, people with just light perception, can tell the difference between daylight and nighttime, but nothing else. I have some environmental light perception too. Not sure what the correct term for this is, but it means I can detect where for example a window is located. Occasionally, when the light is right, I still have object perception for large objects such as cars or people (within a few feet’s distance). I do not have form perception though, so I do not see the outline of objects.

In 2013, I had cataract surgery on my left eye. I had suffered a cataract on that eye ever since 2001, but, in keeping with my parents’ view, wasn’t going to have it removed. I finally took the step to ask for surgery when I was 27. I didn’t have my hopes up too high. I mean, the university hospital ophthalmologist had gotten my old records from age eight and hoped I’d get that amount of vision back. I just hoped for some color perception mostly, The surgery again was a partial technical success, in that they couldn’t give me a lens implant again. They offered me a second surgery to place it, but the doctors were by this time able to see my retina had atrophied and offered me little hope. I decided not to pursue the second surgery.

Dealing with vision loss can be hard. I mean, to a sighted person, I am considered blind from birth, but I still valued my residual vision when I had it and miss it now that it’s gone.

Five of the Most Significant Events in My Life

And once again, I didn’t post for nearly a week. I am beginning to feel pessimistic that I’ll complete the A to Z Challenge in April. However, I still would very much love to make it happen. I am pretty uninspired though.

To get back into the writing habit, I am choosing to write about a topic I’ve already posted about on my old blogs a couple of times. It is good though for my new readers of this blog to get to know me. I am going to share a list of important events in my life. Because I need to explain a little about each, this post may become a bit long.

1. The day I left the hospital at three months of age. I was born over three months premature and had to spend the first 94 days of my life in hospital. The unit I was on is commonly referred to as neonatal intensivecare unit or NICU for short, though I wasn’t in actual intensive care the whole time. I was on a ventilator for the first six weeks and, after I learned to breathe on my own, was moved to medium care, the general ward and eventually home. In the NICU, I sustained a brain bleed and developed an eye condition called retinopathy of prematurity. These two conditions are the main cause of my disabilities. I was finally discharged from the hospital on September 29, 1986.

2. The day I started special education. I started school, as most children here in the Netherlands did at the time, on my fourth birthday (June 27, 1990). I started in the first year of Kindergarten, which takes two years here. Just before the end of my second year in Kindergarten though, on May 11, 1992, I was moved into special education for the visually impaired.

The reason why I had to transfer remains a mystery. My parents say it was because I had to learn Braille, but I didn’t get to learn that till over a year later and only because a totally blind boy joined my class. The school was generally only equipped to educate those with low vision. Besides, the first special school my parents chose for me, was for those with mobility impairments. I was turned down because cerebral palsy isn’t my primary disability.

My inner five-year-old holds some memories of this situation. In our memory, I was ill with what could’ve been a partly psychosomatic illness just before moving to special ed. I cannot prove this though.

3. The day I started mainstream secondary school. My parents fought for years to get me out of special ed again. If I have to believe them, they fought from the moment I started in special ed to get me out again. They were convinced I’m far too intelligent for special ed, despite the fact that most schools for the blind offer a normal elenentary school curriculum. Anyway, they finally succeeded after taking me to the third ed psych in eighteen months, a psychologist who’d never even seen a blind person in his practice. This was also when I got labeled as gifted with a verbal IQ of 154. These three digits haunt me till this day.

I started mainstream secondary school on August 25, 1999 at my city’s grammar school. Those six years were awful. I scored above-average academically, but struggled socially and emotionally. I dissociated through most of my time there and hardly have any real memory of it.

4. The day I suffered my psychiatric crisis. After graduating high school in 2005, I’d taken two gap years to work on independence. While in my second gap year, I was diagnosed as autistic. Leading up to this was my increasingly falling apart at the independence training home. I got sent out to Nijmegen to live on my own on August 1, 2007 though. I fell apart within three months. By late October, I was wandering everyday, had multiple meltdowns a day and ended up suicidal. I was eventually hospitalized on November 3.

5. The day I got kicked out of the hospital again. I remained in a psychiatric hospital for 9 1/2 years, but eventually got kicked out on May 8, 2017. I believe the real reason is the government budget cuts to mental health, but my treatment team at the time blamed me. I have been living semi-independently ever since. As regular readers know though, I’m in the process of hopefully getting into long-term care again.

PoCoLo

Long-Term Care Assessment

I’ve been wanting to write much more lately, but somehow, I can’t get myself to actually sit down and write. I remember originally posting twice a day almost everyday when I started this blog, and now I’m barely writing twice a week.

I still need to update you all on the meeting with the long-term care funding person. She wasn’t the physician but the one actually making the decision on funding. The physician may still need to contact my psychiatrist in order to advise this person on funding.

She asked a lot about my level of independence in various situations. Like, she asked whether I can cook or clean the house. I was expecting her to ask about much more basic self-care skills like showering. She did ask about those too. I don’t know whether it’s a good thing or bad that she didn’t go into that much detail about my basic self-care. I mean, those are things I at least try to do myself, even though I fail miserably at them. I thought it should be obvious that I can’t cook or clean the house.

The funding person asked multiple times whether I’d had independence training. I couldn’t go into too much detail about that, but I did make it clear that I got tons of it. I also think I explained that the skills didn’t generalize to a new situation, such as living independently.

The funding person said she may want me to get some type of test for emotional development. There is a questionnaire called SEO-R that I think support staff or others involved with the client fill out to determine at what level a client is emotionally. I googled the descriptions of the different developmental stages. In some respects, I would really be like a 6-month-old, while in others, I’m closer to 7 years. I didn’t recognize myself in the most advanced stage, which corresponds to children age 7 to 12. There is probably a stage for adolescents too, but this scale was originally intended for people with mild intellectual disability, who by definition don’t reach this stage. I know the whole concept of mental or emotional age is ableist, but as long as it’s not used to actually infantilize clients, I think there is some use to it.

The intent of this scale being administered in my case is to maybe qualify me for an intellectual disability care profile. The funding person wasn’t impressed with my IQ anyway. I mean, it was measured as being 154 some twenty years ago, but was measured as at least 35 points lower in 2017 and with a ton of discrepancies. Like, I scored high on calculus, but slightly below average on comprehension. Besides, I didn’t say this, but only the verbal part of the IQ test could be administered because of my blindness. I liked it that this person didn’t see me as some sort of genius.

At the end, my support coordinator tried to explain what we’re going to do with the funding if we get it. She explained about the living facility we visited last week. I got a little unquiet at this point, so the funding person offered to talk to my support coordinator on the phone later. She never did. I don’t know whether that’s a bad thing or not.

I’ve been really stressed out these past few days. I dream almost every night about possible outcomes of this assessment. Like, will I get funding based on blindness or intellectual disability? Or will the funding people decide mental illness is my primary disability and deny me funding because I need treatment for that first? And if I get funding, will I get into the place I visited last week? I hope I will, but I’m not getting my hopes up too high yet.

Now my support coordinator is on vacation and won’t be back till the 27th. I think the funding decision has to be made by then. My support coordinator asked me to text her when I heard about the decision, so that she can bring cake if I get approved. Again, not getting my hopes up.

My New Mac: First Impressions

One of Mama’s Losin’ It’s prompts for this week is to write about your most recent purchase. I don’t know what counts as a purchase, but I really want to write about my Mac, which I bought two weeks ago.

I started writing this post on my new Mac. It’s new to me, but it’s the MacBook Air 2017, so I didn’t expect it to be all that advanced. I also didn’t expect to use it much for the first while. I mean, even after fully installing my current Windows PC in July of 2014, it took me two weeks before I started using it and only because I had spilled tea over my old one. Each new version of Windows required me a lot of learning, so I expected that even more with my Mac.

My husband installed it last Saturday evening. I started exploring it and, within an hour, my husband asked whether I could browse the Internet yet. Safari is one of the clunkier apps on the Mac, so I wasn’t expecting it to work. That evening though, I was reading blogs and commenting using my WordPress account. Apparently, I had figured out some basic web browsing on Safari.

The next day, I explored the Mac further and was blissfully unaware of my incompetence with it. That awareness came Monday, when I couldn’t figure out Facebook or WordPress.com. In the evening, my husband tried to make the mail app work with my self-hosted E-mail account (is that what it’s called?). IMAP wouldn’t work, which caused me to melt down. I said I was going to buy a Windows PC the next day and go back to that. Thankfully, my husband talked me out of making any impulsive decisions.

The last few days have been better. I can more or less work any website that isn’t too chaotic, including Facebook. I finally figured out WordPress yesterday too, although I still prefer to type my blog posts on the iPhone.

Today, I spent my time on the Mac figuring out Apple Music. I have a Spotify premium subscription, but for some reason (them being competitors, I guess), Spotify isn’t available in the app store, or at least I couldn’t find it. I didn’t use to like iTunes on the PC, but so far, Apple Music is good on both iPhone and Mac.

I also decided to put my documents on my Mac. I rarely use offline documents nowadays, but I don’t want to lose them either. I have diaries dating back to like 1999 in my documents. Unfortunately, I couldn’t find Dropbox in the app store either, so I had to retrieve my docs from my external hard drive. That’s a lot easier anyway.

I haven’t installed many apps yet. The only apps I installed so far, that aren’t recommended by Apple, are Kindle and ReadKit. I am not using either yet, because Kindle has a visual-only CAPTCHA to register and I would like to sync ReadKit with a feed reader that also syncs to the app I use on my phone. The most sensible choice for that is Feedly, but I have over 100 feeds I’m subscribed to and then a subscription costs like $65 a year. Maybe I could try Feedly with just a few feeds though to see if it works well with ReadKit and if I can use ReadKit like I want to.

As regular readers know, I am blind and so I use a screen reader. One of the main reasons I chose a Mac over another PC, is that the Mac has a built-in screen reader called VoiceOver. I had read up a lot about accessibility before buying the Mac, but there wasn’t much out there about Braille displays, which I use most of the time. Thankfully though, except for the login screen, everything works fine with my Focus Braille display.

There are also a ton of keyboard shortcuts, both general and VoiceOver-based. I love that, but it is a learning curve. For example, when copying my files from my external hard drive to my Mac, I kept trying to press Enter to open the folders and then realized I had to press Command+O. I also keep trying to press Shift+F10 to open a context menu. I don’t know whether there isn’t such a thing or I haven’t figured it out yet.

This review may seem a bit negative, but it isn’t intended as such. Overall, my Mac is definitely useful. I’m pretty sure I’ll get used to it eventually.

Mama’s Losin’ It

#IWSG: Creative Outlets Besides Writing

I have a ton of things I want to write about, but somehow I can’t get myself to actually write. I started trying to use my new Mac Saturday evening. So far, it works but is still a bit hard to use. The WordPress app for Mac isn’t available in the app store, so it is a pain to install. I’m just using my phone now rather than WordPress.com in Safari, because at least I know how to work this.

It’s time again for our Insecure Writer’s Support Group or #IWSG check-in. This month’s question is about creative outlets other than writing.

I must say I”m not terribly creative. I don’t do any artsy things and am no good at music either. No, not all blind people are musically talented! I tried my hand at learning to play the keyboards and guitar for a bit, but didn’t like either. Granted, my guitar lessons were while I was at summer camp in Russia and the instructor spoke Russian and English only. This was before I knew English, so it took me half an hour to figure out what he meant by the “strings”.

If we expand creativity a bit to include crafts, I have tried a ton of them. I started out trying to make cards in 2012, not realizing how inaccessible this craft is to blind people. I should’ve known, since the blindness agency used to offer card making courses but specifically to the partially sighted only.

Then I tried mixed media, which was similarly inaccessible. Then came polymer clay, which should be doable but not by me. I tried to learn to crochet and loom knit too.

Lastly, I tried soap and bath and body product making. I still love that craft and would someday like to pick it up again, but I can’t do it independently. This is when I realized that the problem may not be exclusively with my blindness, but my cerebral palsy affecting my fine motor skills too.

So in short, no, I don’t do any creative things other than write. But I’d love to learn.

Starting My Journey Towards (Hopefully) Going Into Long-Term Care

Last Sunday, my husband asked me whether I had any interesting events this week. I said no, I would just go to day activities and that’s it. Last week, the consultant psychologist on my case called the long-term care funding agency to ask how far they are with processing my application. It’d been sitting with them since Dec 20 and they formally need to finish the process within six to eight weeks. They said it’s on the roll, but that they’d been busy because of the holidays.

Last Thursday, my support coordinator asked whether I wanted to start looking at group homes now while we’re waiting for the funding to hopefully be approved. She had a particular group home in mind which has had an available room for months. I said okay.

She called the group home’s manager and was told I’m welcome to take a tour but to contact the home’s coordinator. Well, to make a long story short, I was invited to the tour yesterday.

This is a home for people with profound intellectual and multiple disabilities. The manager stressed that the current residents all function at a mental age of six months or so. Now I find the whole concept of mental age confusing, probably because I myself function much higher intellectually than emotionally. I mean, obviously I assumed these people can’t talk, but well. I don’t mind.

I drove by paratransit taxi to the home yesterday. It is in a city about 30 minutes from my home. I was told to ring the doorbell if I could find it and else to wait for my support coordinator to arrive. From the need to ring the doorbell, I assumed it’s a locked home. It is. I had already read up on it though and had read that the home has a fenced yard. Otherwise, I wouldn’t have liked a locked place. Like, there’s one my support coordinator has mentioned too in the city my day activities is in too, but that’s on the third floor of a nursing home building. I’d feel like I was in a prison then.

I asked the home’s coordinator why this is a locked home, since I assumed all residents are in wheelchairs. Turns out some can walk and may elope. So do I when in a meltdown.

We started the tour in one of the two living rooms. It had a lovely sensory atmosphere. The coordinator asked, since I arrived shortly past noon, whether I’d had lunch. I hadn’t, so she offered me a slice of bread. I liked that.

Once my support coordinator arrived, we talked about my care needs. I function emotionally at a really low level, which is why my support coordinator had believed this place might be for me. The home’s coordinator understood and liked the opportunity to get to know me.

In the home, you have your own bedroom. You share the bathroom with one other resident. Since most clients use diapers, not all bathrooms have a toilet, but the one adjacent to the available room does. Then there’s a large sensory bathroom with a tub. I loved it. They also have sensory materials to use in the living room or an individual resident’s room.

I didn’t get to tour the yard, but was told there are lots of swings in it, including a cocoon swing like the one I love at day activities. They also have one they can use indoors in the living room.

As for the rules, there are no strict visiting hours. Family are actively involved in the residents’ life. They also have volunteers who go for walks with the residents almost each evening. Sometimes, volunteers cook for the residents. When they don’t, the residents get readymade meals like the ones I got in the mental institution. Once a week, a music therapist comes to the home. It’s a facility which offers treatment, so you get the opportunity for physical, occupational or speech therapy if needed. There’s also an intellectual disability physician and a psychologist involved.

During the night, a staff sleeps in an upstairs room. All residents’ bedrooms are downstairs and there’s no need to go upstairs to find the night staff. Rather, they use technology to listen for suspicious noises in the bedrooms, but the coordinator did say this could be turned off in my bedroom if I were able to phone the night staff myself.

If I get funding for long-term care, it needs to be tweaked somehow if I want to live at this place, because my funding would be based on blindness and this is an intellectual disability facility. Then, the manager, physician, psychologist and all need to agree that I’m the right fit. This includes a risk assessment. The coordinator says this is in case of things like severe epilepsy, but my husband told me to mention elopement.

Of course, I feel internally conflicted as to whether I want this to work out. I’m excited about the facility itself, but still feel like I shouldn’t need this much care. I’m afraid the funding authority is going to agree here.

Once I’d returned home, my support coordinator called me. She had heard from the funding authority physician. The consultant psychologist had already explained my needs, but she wants to see me anyway. That appt is going to be tomorrow at 10AM. I assume this is to validate I in fact have the needs the application says I do. Then, the physician will write a report for the funding decision-maker, I guess.

My support coordinator is going on vacation on Feb 7 and won’t be back till the 25th. She said though that, if my funding gets approved while she’s on vacation and I want to start the process of applying at this living facility, I can do so with the care consultant and my support worker.

PoCoLo

Sorry Not Sorry

Today I am not sorry I suffer with mental health issues. I didn’t choose them, no matter what some people think. I don’t necessarily have a bad attitude – and when I do, it has nothing to do with my mental illnesses.

Today, I”m not sorry I am a trauma survivor. I didn’t choose to endure the traumas I endured. These traumas and the resulting mental health symptoms do not make me weak. They do not make me not resilient. People can be resilient and suffer from mental health issues or trauma-related symptoms nonetheless.

Some people choose to believe that the fact that I don’t live up to my intellectual potential, means I’m not resilient. They reason that, if I were persistent enough, I would have finished university and had a job by now. They also judge my lack of persistence in these areas as a sign of a bad attitude.

Today, I’m not sorry I live with multiple disabilities. I don’t care whether you consider these disabilities valid or not. The people who judge me, think I use my disabilities as an excuse not to fulfill their expectations of me. They don’t realize that it’s my life and I have absolutely zero obligation to fulfill their dreams for me. No, not even when these people are my parents. I have no obligation to prove I am worthy of life.

People who don’t know me well commonly assume I must be very resilient for the mere fact that I’m alive. I didn’t use to like this attitude either, but then I read today’s post by carol anne, which inspired this post. Both of us were born prematurely. Both of us suffer with lifelong disabilities as a result. Both of us endured childhood trauma. Doesn’t the fact that we survived and haven’t succumbed, mean we’re pretty resilient? I think it does. We’re badass!