Tag Archives: Blindness

My Experience Being on Disability Benefits #Write31Days

Welcome to day 3 in the 31 Days of Autism. Today, I want to wrote about employment or the lack thereof.

I never worked. I didn’t even have a summer job as a teen. I even only babysat for the neighbors once when my sister was ill. When I had to write a resume in college, I put the few barely-active E-mail lists I owned on it, LOL.

When I was seventeen, my parents told me I hd to apply for disability income. I was told it was just to make up for the work non-disabled college students do besides studying. This may be one reason my sister is still a bit jealous, as she never worked and hence didn’t have an income in college (other than her student loan).

I never had any trouble going on disability. I didn’t even have to meet the social security agency’s doctor or employment specialist face-to-face. It was all handled by a simple phone conversation with me and my parents and a few bits of information from my family doctor.

Note that I hadn’t been dagnosed with autism when I was first approved for disability in 2004. Once diagnosed, my support worker wrote a letter to the social security agency informing them of several things: I had been diagnosed with Asperger’s Syndrome, had dropped out of college and had been admiitted to a psychiatric hospital. I probably would’ve had to notify the social security agency that I’m no longer in a hospital, but I don’t know how to go about this.

In 2010, the law on disablity income for people who were disabled from childhood on was revised. I don’t know what was changed, but I heard that at least there was talk of not giving people disability benefits from age 18, instead moving the age threshhold to 27. I wasn’t yet 27 by that time, but maybe those already on disability were exempt. Also, those in institutions were talked of being exempt from this rule, and I obviously was.

In 2015, the Participation Act went into effect. This means people won’t get disability payments if they can do a task that is part of a job (instead of being employable in an actual job), have basic employee skills, can work for at least an hour on end and can work for at least four hours a day. In any case, it’s extremely hard to go on disability now. I was still institutionalized when I received the letter at home saying I had no employment potential. My husband jokes that the letter was full of zeros.

Before I’d received the letter, I had worried incredibly. Now that I checked an explanation of the components of employment potential, I’m worried all over again. A Dutch law firm states: “If you wash the dishes at home, you may have employment potential.” This was nuanced a bit to say that, for example, if you volunteer in a sports club cafeteria doing the washing up, this counts as a task. Interestingly though, I don’t think effectiveness or speed are counted in, but they do play a role in the one-hour and four-hour rules.

Many people I know, even those requiring a lot of support, are not approved for disability income under the Participation Act. I am just so glad I am.

Blind People Should

A few years back, there was a flash blog event that had autistic bloggers all finish the sentence “Autistic people should …”. I think the reason was to counter the hurtful search suggestions that Google made when people typed in “autistic people should”. I was reminded of this event when I read this weeks #theprompt, which is “should”.

I was also reminded of my own preconceived ideas about what disabled people should. A few days ago, I wrote to a disability support group on Facebook about feeling like I was setting a bad example for the disability community because I don’t work and spent years in an instituton. Shouldn’t I have to explain why I can’t work or live fully independently? The short answer is: no.

I was feeling like I should have a disability label to justify my every need because of what I learned whilst being part of E-mail groups run by the National Federation of the Blind, one of the two major organizations of the blind in the United States. This was in the early 2000s, mostly before I’d been diagnosed with autism. What I learned was that blind people, unless they have severe additional disabilities, which I’ll address later, should be able to achieve as much as sighted people do. For example, we should be able to read at the same speed, get around with a white cane completely independently, go to college (I think I picked up the term “college-bound” there), be employable, etc. I can’t do or be any of these things. Keeping the bar of expectations high was the motto of the parents’ organization of the NFB or so it seemed. I always imagined a candy bar put up on a star light years away and me being told to reach for the stars.

Sometimes, when people judged blind children or adults they only knew through newspaper articles not to be independent enough, someone would come up with the get-out-of-jail-free pass: “Maybe the person has additional disabilities?” This is a real possibility, since strangers usualy assume my every impairment is due to blindness despite my additional disabilities, so I assume newspaper reporters are no different. Yet does it matter? Should it? Apparently, sometimes.

In an old (like, late 1990s) issue of Future Reflections, the NFB’s magazine for parents of blind children, a blind adult reported his shame when he crticized parents of blind teenagers for not taking their teens to a seminar on independence. It turned out he was speaking to a roomful of parents of teens with multiple disabilities, so obviously they couldn’t bring their teens. I assume most of these teens had the type of disability that seems to have a monopoly on the term “multiple disabilities” when additional disabilities are involved: severe intellectual disability. After all, when I played the additional disabilities card after my autism diagnosis in 2007, I was told to look up Temple Grandin.

I may sound bitter and I shouldn’t be. After all, I do get the services I need now, even though they cater to, well, people with severe intellectual disabilities. That being said, I know I’m incredibly privileged now to have found my particular care agency, because most others would try to fit me into the mentally ill mold or the blindness mold or any other not-completely-fitting mold rather than looking at my needs.

This all brings me to my point, which is that blind people, autistic people, any kind of disabled people, any kind of people in fact, should not have to justify their needs. We are all human and all different, after all.

mumturnedmom

“Just Blind”: My Experience With Passing and the Resulting Burn-Out

Last May, I wrote my first post in the 30 Days of Autism Acceptance. I never followed through with the rest of the challenge, but today, I’m inspired to write on the day 2 topic, which is passing and autistic burn-out.

There is a lot of societal pressure to look and act as “normal” as possible. Passing is the situation where people who don’t belong to the “normal” majority appear as though they do. This may refer to disabled people appearing non-disabled, but it also refers to people of racial minorities being perceived as white or to queer people being perceived as straight.

I never fully passed for non-disabled, because I’m blind, but I did try to pass for a long time. People however often could tell that I had some kind of disability even if they couldn’t tell what it was. Interestingly, besides not passing for sighted, I don’t believe I could ever fully pass for neurotypical, except to those who believe an autistic appearance is normal for blind people.

In addition to appearing normal, disabled people are also pushed to achieve those things that are deemed “normal” in society. That is, except when you look so obviously disiabled that people judge you to be too “low-functioning” for that, in which case they usually greatly underestimate your abilities. I may write about that at some other point. There is a lot of pressure even from within the disabled community to perform as well as non-disabled people do. I see this particularly in the blind community, except, once again, when a person is seen as severely disabled enough not to need to achieve.

Until I was twenty, I was almost universally perceived as “just blind”. Oh and presumably extremely intelligent. As such, I had to perform according to my intelliigence, so I had to go to a mainstream, high-level secondary school. All my problems there were chalked up to either my blindness or my high intelligence.

At age twenty, I resided in an independent living training home for the disabled, which had originally been set up specifically for the blind, so most staff had some expertise on blindness. It was there that it first became apparent that I’m not “just blind”. I was referred for a diagnosis and diagnosed with an autism spectrum disorder in March of 2007. Eight months later, while living independently, I completely fell apart. I experienced autistic burn-out. Yet many people still see my diagnosis, my burn-out and my subsequent voluntary admission to a psychiatric hospital, as an elaborate way for me to manipulate people into giving me care.

I never fully recovered from my burn-out, in the sense that I went back to living a “normal” life for a person who is “just blind”. I was in college in 2007. Now, even though I’m out of the institution, I have no plans of going back to full-time education or finding a paid job. Though I may want to attend some part-time education or do volunteer work in the future, I’m now happy to be at a day center doing sensory activities. I am also glad that I was finally approved for home support yesterday.

In this sense, I did in fact recover from my burn-out. I mean, I did not return to the life that essentially caused me to burn out, but I do think my life is meaningful. In fact, I am happier now than I was when I still passed for “just blind”.

Ten Things You May Not Know About My Disability Experience #SEND30DayChallenge

Today I discovered the #SEND30DayChallenge, a 30-day special needs and disabilities blogging challenge. I have participated in way too many 30-day challenges and there’s not one I’ve finished. However, they’re usually just meant to inspire people to write about certain topics. Most people I know don’t follow these challenges over 30 consecutive days.

The first topic in the #SEND30DayChallenge is “the meaning beheind your blog name”. I have a pretty self-explanatory blog name, so I’m not writing about this. Instead, I’m going with the day 2 topic, which is “10 things you don’t know about ___”. Here are ten things you may not know about my disability expierence.

1. I am multiply-disabled. One common myth about multiple disabilities is that the term should refer only to those with an intellectual disability combined with a mobility impairment. I do have a slight mobility impairment, but I don’t have an intellectual disability. However, I am multiply-disabled nonetheless. I am, after all, blind and autistic and mentally ill and have some other difficulties.

2. I struggle with seemingly easy things while I find seemingly diffcult things easy. For example, I can work a computer but not put peeanut butter n a slice of bread. Similarly, due to the variability in my energy level, executive functioning and mental health, I can do some things one day but not the next.

3. You cannot always tell why I have a certain difficulty. Neither can I. This is hard, because people often want to categorize and label things that are out of the ordinary.

4. I have difficulty with communication sometimes. I don’t just mean non-verbal communication, which would seem logical because I’m blind. I mean speech too. I am usually verbal, but lose my ability to speak coherently (or sometimes at all) under stress.

5. I have serious sensory issues. For instance, I find certain sounds incredibly overwhelming. I also seem to have sensory discrimination issues, like with understanding speech in a crowded environment. The worst bit about my sensory issues is that I don’t always notice which is bothering me. For example, I may be hungry but not notice it because there’s a radio in the background that catches my attention.

6. I have slight motor skills deficits. Whether these are diagnosable as anything, I do not know. People on social media often urge me to seek a diagnosis, as my parents either weren’t given a diagnosis or don’t care. However, I find this incredibly stressful and difficult.

Just today, I considered buying myself a white walking stick. They’re sold at assistive equipment stores for the blind. I after all usually use my white cane more as a walking stick and the white walking stick would still signal people to my blindness. However, as much as I seem comfortable invading Internet spaces for mobility-impaired people, I don’t feel so comfortable getting assistive devices for this reason.

7. I am blind, but I still can see a tiny bit. I have light perception only according to eye tests. This’d ordinarily mean I’m functionally totally blind and I usualy say I am. However, I can see such things as where windows or open doors are located. This sometimes confuses people, but in reality, most people who say they’re blind have a tiny bit of vision.

8. I exhibit challenging behavior. This is not willful misbehavior. Rather, it is a response to overload or frustration. I am learning better coping skills.

9. I am more than my disabilities. I have summed up most of my recognized challenges in the above points, but like every human being, I have my strengths and weaknesses.

10. I don’t have special needs. I just have needs. I mean no offense to the special needs parenting community, as I know they don’t mean to offend me. My point however is that, if we see the needs of disabled people as somehow more “special” than those ordinary needs that non-disabled people have, we may forget that not all our needs are explainable by disabilities and we don’t need to have a recognized disablity to justify our needs. We’re all human, after all.

You Baby Me Mummy
Spectrum Sunday

If I’m Not Autistic, What Am I?

My psychologist removed my autism diagnosis, which I’d been first given in 2007, last summer. After a long process of negotiations, she decided to diagnose me with dependent personality disorder, borderline personality disorder traits and depressive disorder NOS. I strongly disagree particularly with the DPD label, but more importantly, I want my autism diagnosis back. I requested an independent second opinion, which I’ll be getting the first appointment for this Thursday. Just this evening, I told a leader of an autism group in the Netherlands that I’d be closing the autism chapter if the second opinion provider agreed i’m not autistic after all. Then I’d definitively consider myself, well, what? I’ve rarely used the word “allistic”, which is someone who isn’t autistic. I feel that all people with neurodevelopmental conditions essentially fall on the same spectrum. Many autistics disagree and would not allow, say, a person with ADHD into their community. Indeed, if I’m not autistic, I’m allistic, period.

There used to be some concept of “cousins” in the autistic community, which included people with other neurological or neurodevelopmental differences, such as ADHD, Tourette Syndrome or hydrocephalus. Maybe I could consider myself a “cousin”, since I was at one point diagnosed with hydrocephalus and that’s a far more hard-wired diagnosis than is autism. So I’d be an allistic cousin to the autistic comunity. The concept of “cousins”, however, is barely accepted anymore.

Besides, it’s not just about community. It’s about identity. If I’m told that after all I’m not autistic, a vital part of my identity is being destroyed. Someone compared it to losing their status as an animal lover. It’s far worse. It’s like being told I’m not blind – there is another reason I’m unable to see, but that’s not called blindness. Besides, there’s no ICD-10 or ICD-11 or where are we these days code for it. This is analogous to what my psychologist has done with respect to my autism: it isn’t there, because there is another reason I have cognitive and sensory and social-communicative difficulties, but there’s no DSM-IV code for that.

It affects services, too. If I lost my status as a blind person, I would no longer be allowed to use my white cane. I would no longer be provided with reading materials in accessible formats. I would no longer have access to services for the blind. If there’s no ICD-whatever code for explaining my lack of sight, there won’t be any other way to gain access to these accommodations or supports. I can imagine this is in part the reality for people with conversion disorder manifesting as blindness, since some service and accessible reading material providers ask for verification of the “physical basis” of one’s blindness.

If I lose my status as an autistic person and there’s no diagnosis to replace it with, I’ll not be able to access services that take into account my cognitive, sensory and social-communicative difficulties. In fact, my psychologist has already voiced her disagreement with me applying for day activities for people with traumatic or acquired brain injury. She says I have “congenital brain injury”. At least, that was her reason for removing my autism diagnosis. Since “congenital brain injury” isn’t acquired or traumatic brain injury, I won’t qualify for services for that. Since in fact “congenital brain injury” does not exist in the diagnostic handbooks, there is no help for it. It’s worse even than conversion blindness, since that can be treated somehow.

Now imagine that I, who clealry has an eye condition causing blindness, were told I had conversion blindness for lack of a better diagnosis. That’s about what it feels like being diagnosed with dependent personality disorder as a clearly neurodivergent person.

It could be worse. I could be told I’m not neurodivergent at all. This would go beyond saying I am an unfortunate case of falling between the cracks with my useless diagnosis of “congenital brain injury”. To use the blindness analogy again, this’d be like being told I am fully sighted, yet only believe I’m blind for attention, because I don’t accept my status as a short person, or whatever nonsense claim people have made as to why I erroneously believe I’m neurodivergent. This is a possible outcome of my second opinion too. After all, though I have hydrocephalus, there is no proof as per a neuropsychological evaluation that this has caused me lasting impairments. My psychologist is of this opinion to an extent and so are my parents and sister, believing I have problems because I think I do.

Back to my autism diagnosis or the lack thereof. Some people say you’re autstic if you’re autistic no matter how many professionals say you are not. They say that, if support tailored to autistics, including being part of the autistic community, works, you must be autistic. With my poor self-image, I’m not so sure this would be the case for me.

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.

Blindness Isn’t Black or White

The Foundation Fighting Blindness has launched acontroversial campaign encouraging sighted people to blindfold themselves for a short time to see what it’s like to be blind. Most blind people I know are vehemently opposed to this idea. I am no exception. It’s however not because simulation is wrong by definition.

First, simulating disability is often seen as fundamentally wrong by the disabled. The reason is that you don’t know what it’s like to live your entire life or the rest of your life with a disability by putting on a blindfold, sitting in a wheelchair or trying out other disability simulations. You will be able to take off your simulated disability when you’re done with it, after all.

Though I mostly agree with this, I can see how simulation can be useful for relatives of someone with a disability to learn to understand the alternative ways in which the disabled accomplish everyday tasks. They will also experience, though to a lesser degree, the obstacles people with disabilities encounter as they use these alternative techniques. For example, when I was at my country’s blindness rehabilitation center in 2005, my parents tried to put jelly on a slice of bread while blindfolded. My mother and I made a mess, while my father didn’t. Then again, he noticed as he took off his blindfold that he’d placed the can of jelly, the butter, the bread etc. all around his own plate. In a similar way, sitting in a wheelchair can help able-bodied people understand the need for ramps.

However, by experiencing “disability” for a short while, you will not experience the systemic societal oppression that comes with being in the minority position of being disabled. You will not experience the psychological and social impacts of disability. You will not have time to adjust, but then again, you won’t need to have time to adjust.

Another problem specifically with blindfolding to see what it’s like to be blind, is that blindness comes in many forms. (I’m sure there are analogous explanations of this for other disabilities. For example, most wheelchair users can walk a short distance. However, since blindness is what I know best, I’ll go with that.) Blindness, in other words, isn’t black-or-white. Only a small percentage of people who are blind have always been totally blind (with no light perception) or went totally blind (with no light perception) in an instant at one point in their lives.

Most people have at least some viison, whether that be useful or not. Many people who say they are totally blind, in fact have light perception only. Light perception is the ability to tell whether it’s dark or light. In its most limited form, it is the ability to tell the difference between daylight and nighttime. Light projection is the ability to tell where the light comes from, such as where there are windows in a room. Since both light perception and light projection are measured with the eye doctor’s flashlight, not large sources of light like windows, it is possible to test as having light perception only when you really have some light projection. I am an example of this. When I went to the blindness rehabilitation center, they were initially informed by my doctor that I am totally blind, since in the doctor’s opinion I had no functional vision. I have heard from many people who have experienced true light perception only that indeed this would be the point at which they’d consider themselves completely funcitonally blind. However, this is the reason there’s a difference between functional vision and vision as measured by an ophthalmologist.

However, I always say that I am “blind.” This led to a particularly frustrating experience one time in 2010 or 2011, when I had to undergo oral surgery. One of the doctors or assistants said that I didn’t need a sheet over my eyes because I’m blind anyway. Guess what? Even those with the most limited forms of light perception can be bothered by a bright dentist’s light shining right into their eyes.

Then I didn’t even mention people who are judged to be functionally blind but who do have some very limited but useable vision. I was in this group from age eight till age eighteen. I had very limited color, form and object perception, but my parents and even psychologists working with the blind said I needed to accept the fact that I am blind. Maybe I wouldn’t have had that much trouble with it had they not constantly suggested that blind meant no useable vision. Visual techniques may not be the most efficient in many situations, but that doesn’t mean the vision isn’t there.

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.

Realizing I’m Blind

During the #AtoZChalenge, I had all kinds of ideas in my head about what I wanted to blog about once the challenge was over. Now that it’s May and the challenge is over, I however experience a bit of writer’s block. All these ideas that I had during April seem to have vanished. However, O just remembered one of them, which was to write a kind of series discussing topics related to blindness. I am going to answer some of the questions from the Thought Provoker. The Thought Provoker was a monthly question relating to blindness between like 1998 and 2004. The provoking stories and questions are still online. Today, I will write a response to Thought Provoker 10, which asks what a person thinks when they first realize blindness or vision loss has touched their life.

The story seems to be about a person going blind later in life. I was born legally blind. My parents tell me I first realized I was visually impaired at around age seven, when Braille reading was introduced to me. I know my realizing that blindness affected me was a gradual process. At around age eight, I’d ask my parents: “How can yu see that?” According to my parents, it seemed as though I thought I could learn to be sighted.

My parents have always been open about the nature of my blindness. I knew I had a retinal condition. When a great uncle had a retinal detachment and described what it was like, I feared I’d get it myself, because I saw those flashes he described too. It wasn’t that far from the truth indeed.

Strangely, I also feard going blind from totally unrelated, ridiculous causes. Like, I learned about people who drank cleaning products with methanol in them and who subsequently went blind. From that moment on, when my parents used said cleaning product, I was always afraid that I’d accidentally touch it, then lick my fingers and go blind.

In 1993 and 1994 I had two eye surgeries to hopefully save my vision. They were largely unsuccessful, though I still had “hand motion” vision after the second surgery. This means that at 20 feet away, I could see someone’s hand moving but not count their fingers. My parents say that my eye doctor gave up on me after the surgery in 1994. My vision would deteriorate and there was no way of preventing this.

I never accepted this until I entered mainstream secondary education at age thirteen in 1999. I tried for a while to show I still had some vision, but quickly learned it was useless, certainly when compared to sighted people’s. This was the point at which I gave up on myself vision-wise.

Still, my attitude was more one of resignation than of active acceptance. The thought that my sight might be restored someday was on my mind all the time. When, in 2001, a cataract was discovered on my “good” left eye, I pretended to be more concerned with the appearance of my eye than with my vision. Inside, I did worry what had caused this. Was it the distilled alcohol I had drunk in chemistry class the day before?

I finally decided to go pursue cataract surgery in 2013. I wanted to know once and for all whether my sight could be restored and the only way to find out was to get the surgery. It was largely unsuccessful and I gained only very minimal improvement in vision from it. Since then, I realize blindness is not jus tin my life, but I’m in fact totally blind.

The emotion that went through my mind when I realized this was at first stoicism. I never really cared about my sight, I reasoned, and nothing had changed for the worse after surgery anyway. Then came depression and hopelessness. It dawned upon me that this had been my last chance for sight restoration until or unless technology advances. I hate that adage, because it gives me false hope, but I can’t shake it off. In this sense, I’m still in denial.

When I Look in the Mirror…: Blindness and Body Image

Today, Finish the Sentence Friday’s starter sentence is: “When I look in the mirror, I see…”. Now I could easily respond that I’m blind so I don’t see anything in the mirror. That would however be feeding a common misconception, that is, that blind people don’t have body image issues because they can’t see what they look like in the mirror. Some people even go so far as to assume blind people can’t have eating disorders for this reason. First of all, of course, not all eating disorders are about body image. However, let me tell you, I know several blind people with anorexia, which is in part about body image.

The relationship between my blindness and my body image is however quite complicated. I can’t say there is no relationship, because there is. For example, I gained over 40lbs in the last four years. I know this because people tell me the number on the scale. However, I haven’t tried this but I’m pretty sure that if I had to estimate my size, I would be far off and see myself as far thinner than I am. I do obviously feel my body and I use my hands to measure it. That’s gotten harder as I’ve become bigger, but I don’t notice it as much as someone would by looking in the mirror. I don’t exactly see myself as skinny, in that I know I’m quite fat, but I do often have a hard time reconciling the numbers on the scale with how I feel like I look.

This may seem weird, because I do have a negative image of my body’s shape and size. I hate the fact that I’m fat. When I notice clothing getting tighter, I feel pretty awful about myself. I’ve said that I should weigh half as much as I do now (which would put me in the underweight range). That being said, I play these mind tricks where I allow myself to gain weight despite wanting to lose it. Like, I’ve gotten this insane kind of logic where I’m at a good weight if halving it would put me in the anorexic range. I got it from a Dutch book called something like “How I halved myself and won the battle against anorexia again”.

There are other aspects to body image of course. People who estimate my age by looking at my face, usually think I’m quite a bit older than I am. I can feel the tiny wrinkles on my face, of course, if I really attend to them. That in turn makes them feel a lot larger than my husband says they are – he actually says I don’t have wrinkles at all. However, again, in my mind I still see myself as looking like a teenager.

The last time I had some vision of what I looked like, I was about thirteen. In this light, it makes sense that I am stuck on the image of myself as a teenager. It’s not just my body image though. I still see myself as somewhat like a teenager in many ways. That could be my autistic difficulty adjusting to change applied to myself.

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