Category Archives: Blindness

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.

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.

First Steps Towards Independence: Blindness Rehabilitation in 2005

This week on the spin cycle, we’re discussing firsts. Last Friday, I visited a woman I first met at the blindness rehabilitation center in 2005. Another guy we both met there too also came over. This was my first time meeting them since I graduated from the rehabilitation center.

The rehabilitation center experience was quite interesting. I had just graduated from high school two months earlier and didn’t want to go straight to university. So in order to have some practice on my first steps towards independence, I became a resident there four to five days a week for four months.

The program was quite intensive. I had orientation and mobility training, occupational therapy, physical therapy, music, textile arts and handycrafts, as well as three different types of communication training and counseling with a psychologist. I also had vision therapy.

During orientation and mobility training, I learned to plan to go someplace and to travel there effectively using my white cane. I learned to be quite a good cane traveler even though I’d always had trouble using the cane correclty, and still do. After about six weeks at the center, I started using public transportation to go there on Monday and to travel back home on Thursday or Friday. I also learned to travel to and from the local supermarket and to use customer service to get my groceries.

Occupational therapy had several components to it. First, there was the teaching of housekeeping and cooking skills. I didn’t yet master these when I graduated from the center, so went on to live at an independence training home afterwards. Another part of occupational therapy was group-based training in compensating for our visual impairment with our other senses. This, for me, was quite easy in the practical sense, but my social skils difficulties emerged there. There was one great workshop on applying make-up without sight. I loved it.

I also had physical therapy because I have poor posture and had developed mild scoliosis as a result. Physical therapy wasn’t all that effective, because I didn’t practise the exercises out of session.

Vision therapy was very interesting. At first, I had a vision therapist who didn’t acknowledge my admittedly tiny fraction of residual vision. When at one of the communication sills training sessions though, another vision therapist joined the trainer and I arranged for sessions with her. My vision was still virtually non-existent, but I learned a lot about what I could and couldn’t do with it. I also had an opportunity to select NoIR sunglasses that would help me cope better with my light sensitivity. This vision therapist was very patient and thorough in answering my questions. Though in the end my emotional adjustment problems surfaced, which of course she wasn’t trained in dealing with, I did feel very much validated.

Music, textile arts and handycrafts were quite useful too. Though I didn’t practise what I learned there for another few years to come, the instructors there taught me that I could indeed do arts and crafts with no vision. Music wasn’t my cup of tea, so I stopped playing the keyboards after graduating from the center.

The communication skills training sessions were great. I took basic communication skills, assertiveness and communication about your visual impairment. I had one trainer for both basic communication skills and assertiveness and another for the communication about your visual impairment training. The first one was great at letting me see that, if I moved past my anxiety, I could be quite sociable. The second trainer was the one who cooperated with the vision therapist.

Counseling was the least useful bit about the rehabilitation program. The psychologist was blind herself and for one thing didn’t grasp my emotional adjustment issues. She focused on the fact that I had to put non-disabled values into perspective and for example learn to ask for help. Though I did accept this eventually, I still couldn’t cope with the many losses of vision loss. I don’t think a four-month-long rehabilitation program is enough for that anyway, as I still don’t fully accept this ten years on. However, the other problem was we just didn’t click in terms of communication styles. I didn’t open up easily and there just wasn’t enough time in the program for me to work on even just those issues that are due to blindness. I understand that, but the psychologist could’ve refrained from rushing me through a dozen issues.

I was a residential client there even though the rehabilitation center was in my home city. In the evenings, the clients spent lots of time amongst ourselves discussing our rehabilitation process. This was very healing to me. It also was a great opportunity to practise social skills.

Even though my rehabilitation was supposed to be my first step towards independence, I was in many ways at my highest point in terms of independence while there. I don’t like to admit this, since I did learn other sklls in the ten years since. Also, the fact that I didn’t become more self-reliant makes it look like I just need a kick in the pants. In fact, however, the program had lots of one-on-one instruction incorporated, which I can’t get now that I’m a mental patient. I still grieve this loss of independence, but this possibly has to do with my adjustment to my psychiatric illness.

Autism and Blindness: Reflections on My Diagnosis

Today, I read a post by an autism MOm feeling lucky that her children were diagnosed relatively early on. It caused me to reflect on my late, but not exceptionally late diagnosis of autism. I was diagnosed at age twenty. This was not because no difficulties were noted early on, but because my parents felt a diagnosis would be limiting me, so they didn’t seek one. And I can see why.

I was autistic all my life. I was autistic when the school questioned my intelligence because of my poor behavior and what I can only think was underachievement. I was autistic when I was finally accepted into a high level, mainstream high school. In 2003, I attended a performance by some of my teachers who were mocking school policy, and one of the things they mocked was the school’s overrepresentation of special needs and gifted students. I had three of the conditions they mentioned the school had perfect programs for: intellectual giftedness, autism and blindness. Nonetheless, if my autism had been diagnosed before my acceptance into this school, I most likely wouldn’t have been accepted. In a way, I applaud my school for accepting me as an individual. I didn’t fall apart, or at least not while still there, so probably they met some of my needs to a reasonable degree.

I was autistic when going to blindness rehab and independence training. I was autistic when enrolling as a psychology major at the nearby college. Had I been diagnosed before my enrollment, I would most likely not be accepted regardless of my qualifying high school diploma. I was diagnosed while at this college and in independence training.

I was autistic and diagnosed with it when I enrolled as a linguistics major at university. I was autistic and diagnosed with it when I dropped out. I was autistic and diagnosed with it when I was admitted to the psychiatric unit, although this unit wouldn’t accept my diagnosis at first.

My parents believed that an autism diagnosis would limit my ability to become independent. It did. I believe that a lack of diagnosis would limit my ability to have a good quality of life. It did. And I for one believe that quality of life is more important than independence.

Some people believe that an autism diagnosis would enable a child’s or adult’s care team to cut the child or adult some slack with regard to their behavior. I believe that my parents and teachers in high school cut me more slack than my support staff at independence training or the college teachers did, and this is why I needed a diagnosis. They sought a diagnosis because they knew my behavior wasn’t normal. Accpeting my behavior as normal for me might’ve worked when I was a child, but in the real world, it doesn’t work.

I recetnly read an article in a magazine for parents of blind children about a mother whose child was suspected of having autism in addition to being blind. Eventually, the parents decided not to pursue a diagnosis, as they reasoned the child’s behavior was understandable given her character and blindness. My first reaction to this article was that I’d trade my diagnosis any day for true understanding of me as an individual. The thing is, the systmem doesn’t work that way.

Memories of Summer: Traveling While Blind

I haven’t participated in #theprompt in many weeks, but this week’s prompt appealed to me. It is “memories of summer”. My husband and I are currently planning our vacation for this year, which will be in September, and we’ve run into some problems finding things to do that I actually enjoy.

When I still had some vision, I enjoyed camping out, although I probably didn’t enjoy it as much as I remember. I liked going to the beach. My family used to go to Vlieland, one of the Dutch Wadden Islands. Up until I was around eight, I liked it there. I was in fact sad that, from my age nine on, we skipped a few years. That could just be my insistence on sameness though.

When we went back to Vlieland when I was twelve, I had a pretty horrible time and so did my family due to my almost daily meltdowns. I had pretty much lost my use of vision but still clung to what sight I did have. As a consequence, I was extremely dependent on my sister. We went back the next year and it was even worse. I think this may be one reason my parents stopped taking us on vacation after that year except for a trip to Berlin in 2002.

In 2000, I went to a summer camp in Russia organized by the Janusz Korczak Foundation. It was one big disaster. Formally, it was for both blind and sighted youth, but I was the only blind participant in the Dutch group. I was also the youngest Dutch participant at fourteen. I was pretty dependent. The other participants consequently treated me like a chore, and I reacted to it with frustration and tantrums. I liked some of the Russian staff, but the Dutch staff and participants saw me as a pain in the butt. Probably the only reason I applied to go to the same camp again the next year, was that I wanted to fit in somehow. The Dutch participants who had gone with me the previous year were consulted, in line with the Korczak philosophy of having children be judges over each other, and I was turned down.

In 2002, I discovered the International Camp on Communication and Computers (ICC), a computers and technology camp for blind students. I applied to go there and, even though I was honest about my experience in Russia, I was accepted. I went to England in 2002 and to Switzerland in 2003. Particularly my experience in 2002 was interesting and in a way it helped me accept my blindness, along with some other experiences I had that summer. Unfortunately, most such camps are for children and youth only.

I haven’t particularly enjoyed visiting cities. I went to Paris with my grandma in 2001 and, as I said, to Berlin with my family in 2002. While the experience in Paris was okay, I was often very frustrated in Berlin. This isn’t necessarily a blindness thing. I just didn’t like the unpredictability of not having a clue in the morning what we were going to do during the day. I also didn’t really like sightseeing, because, well, there’s just not much I can see.

This is a problem when planning my upcoming vacation. With my husband, I’ve been to Luxembourg, Germany and Switzerlnd so far. None of the experiences were particularly good, but they weren’t bad either. I liked going for walks in nature, but the surface couldn’t be too rough or I’d fall over. I liked trips where it was clear what we’d be doing, such as going on a train into the mountains. In the evenings, I was usually bored.

One of the positive things, hopefully, about the upcoming trip, is that I’ve decided I’m taking my computer. I’m not planning on staring at the screen all day, but at least this will hopefully cure some of the boredom I experienced during the evenings.

mumturnedmom

Is Crafting Suitable for the Blind?

I’ve contracted the loom band virus. Looming, for those who don’t know, is a way of making jewelry and accessories out of rubber bands. I’ve so far only managed to be able to use the most basic technique, but am loving it and trying out new techniques that I basically think out myself. I can’t access loom band tutorials as they are mostly videos. YouTube is still blocked on my computer to save on bandwidth, and if it weren’t, I’d have to watch a ton of videos to find out which have enough verbal content that I can follow along.

Fortunately, I’ve been helped by a few lovely people in Facebook looming groups. The fellow patient who taught me the most basic technique also offered to lend me her loom band book, so that I can scan (part of) it and see if just the text is enough. Another person offered to type out the verbal content of video instructions or send me a PDF file of the book. The PDF file is an image and the file size is over 100MB, so even though I could convert the image to text using OCR software if I were able to download it, I cannot currently download the file. Yet another person is still thinking of ways she could help me figure stuff out.

Unfortunately, as with any crafting hobby, I’ve gotten the occasional comment that looming probably isn’t suitable for the blind. I do not know this yet, as I have so far only mastered the most basic technique and have gotten stuck on some other crafts too if I tried to go more advanced. I don’t like instant adoration when I disclose in a crafting group that I am blind, either. When people haven’t seen my work, they cannot know whether it is poor, fair or good by non-disabled standards or by their standatds of what a blind person should be able to accomplish. Because of this, I do understand the curious group member’s question whether a craft isn’t too hard for a blind person. Probably I take it too personally when I see it as discouragement.

It may be kind of odd in this respect that I take gentle criticism better than instant adoration or questions about my competency before I’ve shown my work. I remember in early 2013 I sent out a totally rubbish card in a swap, and the recipient happened to be the swap group owner. She sent me a private message explaining that my card was not of sufficient quality for a swap, but also offering to give me tips on how to make better cards. That was a lot easier to handle than the message I received from another member, who said before she’d seen any of my cards that she would never make cards again if she went blind.

Generally, it seems to be that the more substance criticism or compliments have, the better I handle them. For example, I received a message on a stamping group from a person who explained in detail why stamping most likely wouldn’t be suitable for a blind person and offering feedback on the stamped images I’d sent to the group. That helped me make the choice to give up stamping before I’d bought tons of supplies. I myself used a similar approach when a blind friend of mine wantedd to start making jewelry. I explained what is needed to make jewelry and which parts of it she could likely do herself and which she’d probably need sighted help with. I offered to send her some supplies to play with, which I still need to do. She can decide for herself whether jewelry-making is suitable for her, but I can help her with feedback.

Three Months Since My Eye Surgery

Today it’s exactly three months since my eye surgery. I’m not sure what to think of it, given that it failed in all respects. That is, it did give me clarity about my prognosis, ie. total blindness for the rest of my life, but I’m not sure I’m adjusting ot this well. It constatly strikes me that I don’t really miss stuff that comes naturally to the sighted, like reading or independent mobility, but I do miss stuff that came naturally to me. I don’t wish to become sighted, and this is not even because it’s unrealistic. Becoming a low partial again is equally unrealistic now, and I do grieve that.

About eight years ago, I drafted a few responses to Robert Leslie Newman’s Thought Provokers, which were story-based discussion topics circulating on blindness E-mail lists in the late 1990s and early 2000s. One of the stories was about sight restoration. I just thought of this.

When I was twelve in 1998, my father came up to me with some new research he’d heard about that would allow blind people who had previously had some sight, to see through a computer chip or something like that. They were testing the thing with sighted people at the time and planned on testing it on blind people by about 2005, he said. “So when you’re in college, you might be a participant for the research,” he said. Not only did I not get into college by 2005, but his ideas were likely totally off-base. I have been severely visually impaired my entire life, in 1998 had some useable vision and now have none, and those equipments would most likely not work for my eye condition, since many require a retina to be attached to the back of the eye. At that time, I didn’t think about the research much. I had recently lost some of my vision and was scared of losing more and all I thought was: “By 2005, I won’t be totally blind.” When I originally wrote this comment, I said I wasn’t, but realistically speaking, I was.

I don’t have all the facts, but it seems to me that in 1997 and 1998, there was some hype about the possibility of blind people getting their sight back. I know about blind people like Stevie Wonder wanting to see for a short while, and I think he even had surgery so he might see for a few minutes (I don’t understand the technicalities) a few years back, but I never quite wished that for myself. In a way, this is strange, since I used to be about as poorly adjusted to my blindness as could be, given my situation. However, I’m realistic and I know that artificial vision doesn’t work for me at the moment, and vision for a short while would be useless.

As I looked for the above comment, I came across several other drafts of responses to Thought Provokers. One was about which would be easier: being born blind or losing your sight later in life. Another was about whether losing your sight slowly or fast would be easier. I talked in these posts about grieving the sihgt I had, not the sight I never had. This may seem odd, but when thinking aobut vision loss, I always miss seeing colors and some pictures. I wish, for example, that I could use Pinterest. Oh wait, I never had that ability and if Pinterest had existed in 1998, I wouldn’t have been able to use it. (I remember having tried to use a mouse but failed.) I guess after all what I miss are the things I could enjoy with viiion. I don’t miss reading print because I’m pretty proficient in braille, and I never cared much for independent travel so I don’t miss that either. What I did care for, and still do, are crafts, pictures and colors. Especially colors, and these can’t be repplicated non-visually.

Non-Disabled Standards and Afjustment to a Disability

When in counseling at the blindness rehab center in 2005, the psychologist, herself blind from birth, had me read her college thesis. I don’t remember its exact topic – it was soomething about adjustment to disability -, but I do remember her outlinign stages of becoming aware of nd adjusted to disability:

  1. Adhering to non-disabled standards while not feeling one’s disability is a handicap. This is the stage where a person is mostly unaware of their difference from non-disabled people. People with an acquired disability may not go through this stage – I am not sure whether the psychologist, herslef blind from birth, talked about this -, but congenitally disabled people do, for example, when they’re in special education surroudned by all disabled peers.
  2. Adhering to non-disabled standards while feeling one’s disability is a handicap. This is the stage of becomign aware of one’s difference, but not accepting it and assuming one shuld really be non-disabled.
  3. Putting non-disabled standards into perspective while feeling one’s disability is a handicap. This stage is somewhat of an intermediate stage between non-acceptance and adjustment. I think it can be seen as encompassing the reassessmet and reaffirmation stage and the coping stage in Tuttle’s model. While in this stage, the person acccepts the use of alternative techniques, for example, but still feels their disability makes them somewhat inferior.
  4. Putting non-disabled standards into perspective while not feeling one’s disability is a handicap. This involves self-acceptance as a person with a disability, with an awareness of the way in which one is different but while not seing this as making the person inferior.

I do not remember ever having been unaware of my disability, but my parents tell me that, as a preschooler, I was. I was quite a cheerful child back then. When I was still having the DID diagnosis, my parents assumed the trauma causing it was my having had to go into special education and hence becoming aware of my difference. This is somwhat contrary to my rehab psychologist’s experience, who shared in her thesis that she was mostly naive towards her difference when attending special education.

Stage two is where I was stuck for years or even decades. I was solidly stuck on this stage when I was in rehab. When my mental health conditions forced me to step back and put non-disbled standards into perspective I slowly slided into stage three, but with a twist of overcompensation. I became insistent on accommodations probably a little more than I could expect. I am still not sure whether my emphasis on my difference as a badge of honor, so to speak, is in itself unhealthy. I do think that its masking a sense of inferiority is.

What I am not sure about, is what putting non-disabled standards into perspective means. Can you overemphasize your difference and alienate yourself from non-disabled people? Or are disabled people naturally alienated from the non-disabled through the idea of non-disabled standards. After all, what I see in this stages model, is that the person with a disability is always seen as deviant rather than equal. They adjust to their disabiliy relative to non-disabled standards. Is this really as it should be? From a social model perspective, can we abandon this non-disabled standards paradigm and replace it with ahumand ignity paradigm? If we can, will this make adjustment easier? I will have to think on this.

The Many Losses of Blindness

There are many aspects of blindness a person losing their vision must adjust to. I just found an article describing twenty losses of blindness. These include:

  • Losses in the basic sense of psychological security.
  • Losses in basic skills, such as mobility or techniques of daily living.
  • Losses to communication, such as loss of social adequacy, ease of written and spoken communication.
  • Losses of appreciation, such as loss of physical integrity, visual perception of the pleasurable or beautiful, or loss of confidence in the remaining senses.
  • Losses concerning occupation and financial security.
  • Losses affecting the whole personality, such as loss of independence.

For me, losses in my basic sense of psychological security are common and not just blindness-related. I am not dealing with losses in basic skills at this point, and have never felt a loss in communication. Oh well, I have, but it was easy to adjust to.

Where I really struggle is with loss of appreciation. To be honest, I’d hoped to gain color perception back after surgery. This didn’t happen, and there is no way of compensating for the meaning of colors. After all, they can’t be touched, heard or otherwise non-visually perceived. Having always been quite a visual person, I still have a vivid but decreasing imagination of color, but this actually further reinforces the knowledge that I’ve lost the actual perception of it. I remember in 2004 going to blindness rehab and discussing with my fellow students what we would do if we gained sihgt. Most people said they’d read, travel or otherwise gain independence. I said I’d appreciate the beuaty of the sights around me.

As for losses to occupational or financial security, these have not really been related to blindness in my case. My parents say I would’ve gone into engineering or math if I’d been sighted, but this not at all interests me and never did after the age of around twelve. Whether vision loss contriubted to my loss of interest in math, I do not remember. I did consider career paths, such as in speech and language pathology, that are not suitable for a blind person, but I do not know whether I genuinely wanted to become a speech/language pathologist or just wanted to read up on it in university. What I did lose that somewhat relates to this, is recreation. I still miss not being able to draw, for example. Whether this is a loss of appreciation or a loss of occupation, I do not know.

Lastly, there is the loss of personal independence. I did lose independence skills when I lost vision up until my most recent vision loss ten years ago, but now my dependence is mostly related to my mental health conditions and autism. I have to think further on how this personal independence thing affects the whole personality, as is postulated. I think more is meant than just loss of practical independence, but I’m not sure.

Adjusting to Total Blindness

In his book Freedom for the Blind: The Secret Is Empowerment, James H. Omvig talks in the chapter on emotional adjustment about the importance of discussing blindness intensely and mentioning the word “blind” over and over again. This, according to Omvig, makes blindness part of a blind person’s everyday language and desentiszes the negative connotation of blindness.

I have been practising this desentisization for years, and it has helped me to adjust to my blindness. In 1999, when I transferred from special education into mainstreaming, I made a conscious decision to identify as blind from then on. After all, my tiny bit of residual vision was not going to be relevant amongst all fully sighted peers.

Still, I know that blind does not necessairly mean no visiion at all. In 2005 or 2006, I wrote my Dutch information page on blindness, and one of the FAQs I answered was whether all blind people are completley blind, and I answered it with a clear “No”.

As I’m facing the reality of the mostly failed cataract surgery, I wonder if I need to do a further desentisization, this time with the term “totally blind”. I have been doing this for a bit already since early this year, when I noticced my light perception had decresed to the ability to discern daylight from nighttime, but at the same time I was hoping it wouldn’t be necessary with surgery. Now my vision is back to probalby where it was around 2004 or 2005, with my being able to see room lighting, detect the position of windows, etc. I was writing this post, then midway through it left my darkened room and realized that my vision, while still technically being only light perception, had increased a bit from before surgery. Should I use this as an excuse not to desentisize myself to the idea of being totally blind?

I know that now that I’ve had cataract surgeyr, I’ve had my last chance of regaining sight. My intention with seeking an ophthalmologist’s opinion on surgery was more of a psychological nature than of a medical nature. Of course, I hoped for that hand motion vision the eye doctor said was the best possible outcome, but at the same time, I realized right from the start of this journey that a more likely outcome would be no improvement in vision. After all, before the cataract specialist had pretty much given me the choice, I’d expected him to flat out refuse to perform the surgery on me. Once I’d been put onto the waiting list, my hopes were somewhat up, but I still counted on a bad outcome.

Okay, I know this adjustment process has taken me over two decades, so can I technically expect to accept that I’m totally blind and will never regain my vision two days post-surgery? I’m not sure, but I’m actually tired of this adjustment process.