Tag Archives: Low Vision

Adaptations and Services I’ve Used to Overcome My Disabilities

Last year, I wrote a post describing my limitations in as much detail as I could then. I got the idea from a disability discussion E-mail list that I was a member of in like 2004. The next discussion topic on the list was to go into adaptations you’ve used to overcome your limitations. Today, I will share about these.

As a toddler, I seem to have gotten by mostly without adaptations. I did have low vision, motor ipairments and was socially a little immature, but nothing too dramatic. I did have many colds until my tonsils and adenoids were removed at age four. I also saw a lot of specialists. For example, when I was about four, I was seen by some kind of rehabilitation physician because I neeed a cast on my left foot. I got lots of physical therapy and other early intervention too. However, I attended a regular preschool and Kindergarten until I fell apart in the spring of my second year of Kindergarten. Kindergarten always takes two years here, but I didn’t finish my second year because of needing to go to a special school that didn’t have a Kindergarten. Instead, I started in first grade early.

At around this age, I mostly got adaptations for my fine and gross motor impairments. For example, I got adapted scissors to be able to cut shapes out without needing to exert too much strength. I also got a large tricycle funded through the local disability services when I was about eight. I’m confused as to where my parents got the necessary doctor’s signature to get this mobility equipment. I mean, I must’ve seen a rehabilitation physician to declare that I had a severe enough mobility impairment, but I wonder whether the ophthalmologist agreed I had enough vision to cycle safely.

Of course, I did have some adaptations for my vision at this point too. I started reading large print in first grade. In fact, I had taught myself to read at around age five with large rub-on letters my Mom would put into little books for me.

By the end of first grade, I had to learn Braille because my vision was deteriorating. I got long keys on my Braille typewriter so that again I didn’t need to exert as much strength. For reading, at first the teachers would provide my Brailled assignments with double line breaks, because I had a hard time with it otherwise. Eventually, I could read Braille just fine, but it didn’t become my preferred reading method until I got a computer.

I still did use the vision I still had. In fact, I stll do, even though I only have light perception and a little light projection left. At age ten or eleven, I got a handheld magnifier. I remember using it to see the large print atlas we had in fifth and sixth grade, even though I really couldn’t make out anything on it.

By the time we moved across the country when I was nine, my parents stopped taking me to medical specialists. There was nothing to be done about my eyesight getting worse and worse and I no longer needed specialist care for my other disabilities. That is, this is my parents’ version of the truth. I think they may be right but there are some things that just don’t add up. Like, from age twelve on, I was accused of deliberately having an odd posture. Guess what? At age fifteen, the school doctor discovoered I had scoliosis. I had to have physcal therapy again.

At age thirteen, I started regular secondary school. I was functionally blind by this time and did my schoolwork on a computer with Braille display. I also got tactile graphics for the STEM subjects and tactile maps for geography. I also got lots of other nifty math tools, most of which I could barely use. I couldn’t even use tactile graphics much at all.

Like I said, I was discharged from all medical specialists at around age nine. At nineteen, when I graduated secondary school, I went back into care at the rehabilitation center for the blind. Besides orientation and mobility, housekeeping and other blindness-related training, I had to get physical therapy again for my scoliosis.

In 2007, I was finally diagnosed with autism and landed in the psychiatric hospital (not at the same time, mind you). My current psychiatrist remarks that I got little in the way of treatment there and she’s right. At first, it was thought I just needed to be moved into a group home and all would be fine, then when I got my last psychologist, it was decided I just needed a good kick in the behind and to move into independent livng as soon as possible.

Now that I’m 31, I don’t really use many adaptive devices other than my Braille display and my white cane, the latter of which I use more for stability than for its intended purpose. My iPhone has a built-in screen reader and I guess it won’t be long until NVDA is almost as good as JAWS for a computer screen reader. NVDA is free and open source, whereas JAWS costs several hundreds of dollars (that thankfully currently health insurance pays for).

I said eye doctors goodbye for good (except when I need a note to say I’m blind) in 2013 when my last chance to get a little sight back failed. I still see a psychiatrist, though my medcation regimen hasn’t changed in years. I have a community psychiatric nurse, whom I see biweekly for dialectical behavior therapy. As for my mobility, I’m due to see my GP on Wednesday to ask about this and about any treatments or adaptations that could help me improve.

Naptime Natter

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.

All the Light I Cannot See: Adjusting with Blindness

This month, it’s two years ago that I had my last eye surgery, an attempt at removing a cataract from myleft eye. It was hoped that I’d see a little again – before then, I only had a tiny bit of light perception. Though the surgery was a partial technical success, I gained only very minimal functional improvement. I am still classified as having light perception only.

The adjustment process to my blindness is ongoing. I remember ten years ago when I was at the blindness rehabilitation center, my psychologist, herself blind from birth, telling me I just had to accept the fact that I am blind. I didn’t see myself as low vision anymore – hadn’t fo ryears -, but I still had trouble accepting the fact that i’m essentially completely funcitonally blind.

For those who are coming here from a linky and don’t know my story, I was born three months prematurely in 1986 and developed an eye condition common in preemies. It left me legally blind all my life, but until I was around eight, I had considerable vision that I used everyday. I had some vision beyond light perception until I was seventeen.

Even though I’ve been (almost) totally blind for over ten years now, it’s still hard to accept. I don’t miss the loss of independence as much, as I was never all that independent to begin with. Also, though I lost some independence over the years, it’s more to do with my increasing executive dysfunction than with my blindness. What I miss most, is the loss of appreciation. For example, when I craft, I can no longer see what colors I’m using.

I don’t know for sure that I ever had the abilities that I wish I had. For example, it frustrates me that I cannot add pictures to my blog posts without help, because the requirement of having an image go with every blog post is one of the most 101’ish lessons in blogging. Blogs didn’t exist when I still had considerable vision, so I cannot be sure I was ever able to work pics in blog posts. I do appreciate the help kindly offered to me by some fellow bloggers in checking images for me to make sure they go well with my posts. It is a nuisance though having to constantly ask for help. In this sense, I cannot say I miss the loss of independence, but rather the lack thereof.

Sometimes, I wish I were partially sighted again, even though I cannot even know what I’d be able to do that I cannot now with low vision. After all, like I said, blogs didn’t exist back then and I didn’t do many crafts. IN this sense, I wonder whether I truly wish for myself to be the old, partially sighted me, or for myself to be able to compete on equal footing with sighted people.

This post was inspired by the one-word blog challenge. The choices of words for this week were “shame” and “light”.

Everyday Gyaan

Five Things People Usually Won’t Understand About Life with Multiple Disabilities

Julie of Counting My Spoons just posted a list of six things healthy people just won’t understand about life with chronic illness or pain. I didn’t know the first one – that migraine sufferers just can’t take their medication at the first hint of a migraine -, because I don’t have migraines, but I could relate to the others. I feel somewhat guilty about that, because I don’t have a diagnosed chronic illness, except for possible irritable bowel syndrome, which causes the least bothersome of my symptoms.

I do have multiple disabilities, and I thought I’d do a similar list of things people who don’t have these disabilities won’t understand. These all seem to boil down to “we are individuals”, but for some reason, this is extremely hard for the non-disabled to understand.

1. We can’t just choose one of our disabilities and get services for that and then be fine. Seriously, why do you think it’s called having multiple disabilities? My social worker once asked me which is my most significant disability, so that we would find a supported housing agency suited to that. I know, that’s how the system works, but quite frankly, it’s nonsensical.

2. We’re still multiply-dsabled even if we don’t have an intellectual disability. It’s a common idea that “multiply-disabled” means intellectually disabled plus something. In reality, those who are blind and autistic like myself, those who are deaf and wheelchair-using, etc., may still identify as multiply-disabled. I identify as multiply-disabled partly to dismantle the myth that only those with an intellectual disability struggle with “additional needs” as it’s politically correctly called.

3. You can’t just take apart our needs in terms of which needs are due to disability A, which are due to disability B, etc. and then have a complete picture of our needs. For one thing, some disabilities cause a variety of impairments in many different areas and cause different impairments for different people. For another, disabilities influence each other. For example, I am blind, so you’d think I could be using my hearing to compensate. In reality, because of my difficulty filtering out background noise, I can’t. This is somewhat understood by people working with the deafblind, but if you have other disabilities, not so. In general, however, not all our needs may be explainable by a disability we’ve been diagnosed with. I remember at one point when I was at the locked psychiatric ward a man was there who had a vision and hearing loss in addition to his psychiatric illness. A nurse told him that he had to clean up the table after eating, because “he’s doubly-disabled but not triply-disabled”. Now I’m not saying that multiply-disabled people should be exempt from doing chores. I’m just saying that his apparent unwillingness to do the task might as well be inability, regardless of whether this is thought to be “normal” for a person with his particular combination of disabilities. (FYI: I consider mental illness a disability, so in that respect the man was triply-disabled, but in the psychiatric nursing profession, it’s usually not seen this way.)

4. Mild, partial or invisible disabilities contribute to our constellation of needs too. This isn’t applicable to me, because I have a visible disability, but it was applicable to some extent to the man at the locked ward I menitoned abov. He was partially sighted and hard-of-hearing, so because of his remaining sight, he was expected to do tasks I was exempt from. As I said, disabilities influence each other, so it may’ve been that he was in some areas more impaired than I am, but because all of his disabilities were partial, he was often regarded as more or less non-disabled.

5. We have absolutely no obligation to have an explanation for our every experience that is out of the ordinary. You have strengths and weaknesses too, so do we. I’ve often felt like I needed to have a diagnosis to explain my every difference. In reality, I’m an individual with my own sense of self, my own interests, my own stronger and weaker sides. Like I said above, our disabilities influence each other, but so do our personality traits. I am not the sum of my disabilities. I am myself.

Encouraging Children to Read

I was an early but reluctant reader, especially when I had to start reading braille. Before then, I had liked to read, although I never quite moved along because there weren’t any large print books for my reading comprehension level. I was a very slow reader in both print and braille. Still am a slow braille reader. That kept me from getting into the interesting stuff for a long while, because for whatever reason, reading speed is automatically assumed to be related to reading comprehension.

I grew up in a family of readers. My father still doesn’t read much fiction for fun, but he, like me, reads stuff related to his interests. My mother and sister are both traditionally literate fiction lovers. The thing keeping me from reading fiction is mostly that I don’t have the concentration to stick to a book. I have gotten to like it more though as my reading speed has increased.

When encouraging kids to read, however, realize that reading is everywhere especially if your child can read print. I grew up with the idea that reading comic books and the closed captioning on the TV is not “real” reading. Indeed, if a child is to be successful at school, they have to learn to read books, but for daily life tasks, it is at least as important to be able to read reminders on the refrigerator. I also believed the misconception that reading from a computer screen is not “real” reading. In reality, this is the most likely source of reading your child will encounter when they grow up. I’m from a different generation than today’s kids, of course, but I for one get 99% of my reading experience through my computer.

There are many good tips for encouraging kids to read. The most important part for me is that reading needs to be a choice, not a chore. Of course, kids will get reading homework. It may seem logical to ask that reluctant readers read more than their school dictates. I for one spent countless nights in fifth and sixth grade reading material assigned by my parents. I know that it is important that kids learn to read as well as they can, and that, with otherwise academically capable children, it’s hard to see them lag behind in reading. However, you can still twist necessary reading to make it fun. Model the right attitude. For example, when I was reading the Dutch translation of Alice in Wonderland in sixth grade, my father read it in English to show that he was taking on a challenge as well. This also allowed for an opportunity to discuss the book.

For me, the transition form reading print to braille was particularly difficult. It didn’t help that braille books are not that commonplace in the Netherlands. In the U.S., there is the Braille Readers Are Leaders contest which makeschildren feel special yet not alone. I’m not sure if such an event existed in the Netherlands.

The computer can, for braille readers, be a hindrance to literacy, if they prefer to use synthetic speech. For me, the computer saved my reading ability, as I hate synthetic speech. I don’t know how today’s teachers of the visually impaired encourage braille reading in their students. I do know that the adult rehabilitation center only encourages it for labels and such. I understand that.

What’s in a Name: Dual Sensory Impairment, Deafblindness, or What?

It’s always interesting to see how the language surrounding disability evolves over time. In the DSM-IV, for example, “mental retardation” is the accepted term for what is now called intellectual developmental disorder in DSM-5 and intellectual disability by most professionals and the general public. I had to modify a blog post from 2007 when I republished it here, because it had “mental retardation” in it. This term is totally out of use now.

With regards to visual and hearing impairmetns, there are even more varied terms. “Blindness” and “deafness” are the most common, but “hard of hearing”, “hearing impairment”, “visual impairment”, “low vision”, “partially sighted”, etc. are also used. With regards to people who have both a vision and hearing impairment, the question is asked by Wittich et al. (2013) what term should be used for research purposes: deafblindess, dual sensory impairment, or somethign else entirely? The authors reviewed the literature and surveyed a number of professinals and reseachers in the area of deafblindness/dual sensory impairment/whatever. They found that “deafblindness” was more commonly used in journals speciifcally catering towards the vision or hearing field, whereas “dual sensory impairment” was used in more general journals and in journals with a higher impact factor. Similarly, those people surveyed who considered themselves primarily involved with research, preferred “dual sensory impairment”, whereas rehabilitation professionals preferred “deafblindness”. The study authros themselves propose “combined vision and hearing impairment”.

Wittich et al. do not discuss the cultural implications of each term, which were actually what motivated the DSM-5 committee to change the term for intellecutal disability more than did science. Wittich et al. also didn’t survey people with a combined vision and hearing impairment themselves.

Just my thought, but I find “dual sensory impairment” particularly confusing. I also find “combined vision and hearing impairment” really unnecessarily lengthy unless it serves a particular purpose, such as clarifying that hte individual has some vision and/or hearing. It also wouldn’t surprise me if people with acquired vision and hearing loss would prefer “dual sensory impairment” or “combined vision and hearing loss”. After all, people with an acquired disability, in my expeirnece, insist more on “person first” language, whereas those born with their disability prefer to see it as an inherent part of their identity and use language accordingly. I’ll be curious to know how the terminology in this area evolves over the next so many years.

Reference

Wittich W, Southall K, Sikora L, Watanabe DH & Gagné JP (2013), What’s in a Name: Dual Sensory Impairment or Deafblindness? British Journal of Visual Impairment, 31(3):198-207. DOI: 10.1177/0264619613490519.

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.

Eye Surgery

I’ve been legally blind all my life from a condition called retinopathy of prematurity. This condition is i itself not degenerative, but it often leads to retinal detachment due to scar tissue pulling on the retina. In addition, cataracts and glaucoma may develop. In 1993, I developed a cataract on my right (worse) eye. The cataract specialist felt it would be useless to operate on, so my own retina specialist removed the lens, but didn’t implant an artifical lens because I was either too young or she didn’t have the ability to perform this procedure. In around 1998, I lost what little vsion I had retained in that eye due to a retinal detachment.

In 2003 or 2004, I developed a cataract on my left eye. I went to an eye doctor for somethigng different (suspected glaucoma, which was then ruled out) in March of 2004. While we were there anway, my father asked the doctor whether cataract surgery would make any sense. The doctor was vague, saying if I thought I would regain some sight he might be willing to put me on the list, but he wouldn’t recommend it really. I was raised with the idea that I had to accept blindness and, from my last surgery in 1994 on, my parents treated me like I had no useable vision, so I decided I shouldn’t pursue surgery.

But the thought ate at me: what if surgery could restore some of my sight? In 2011 or 2012, I started discussing this with the nurses at my former institution, and they advised me to seek out a medical opinion. Earlier this year, I took up the courage and asked my GP to refer me to an eye doctor at the city’s university medical center. When there, the doctor proposed an ultrasound to look at the condition of my retina and optic nerve. He also requested my records from the hospital I’d been going to in the 1990s. Then he sent me on to the cataract specialist.

The cataract specialist said there was really no way of knowing what the actual functional outcome would be. Like, I had no retinal detachment on my left eye and my optic nerve was fine, but that didn’t mean I’d actually gain any sight back per se. I read up on some research and found that structural condition of the retina really does not say everything about visual function. The cataract specialist was willing to put me on the list for surgery, and I came in hoping to get surgery, so I consented to this. There is some risk that I’ll get bleeding or a retinal detachment due to surgery, but given that I only have a minimal bit of light perception now (being able to discern daylight from night time but not much else), I’m willing to risk this.

Surgery is next Monday. I’m kind of nervous. I guess I’d feel guilty if there were no improvement. Then again, I’d at least know that this was the last thing I could do for my sight then. I feel if there’s going to be no improement and I remain totally blind, I will be able to close this chapter sort of. The doctor had some hope that I would regain hand motion vision, which I had in the 1990s, but I am more pessimistic. If I will be able to see colors and very large objects, that would be absolutely great.