Tag Archives: Visual Impairment

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.

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.

A Reluctant Braille Reader’s Journey

A few days ago, I was contacted by Mary Hill from Mary-andering Creatively, whose blog is mostly on literacy. She asked me to write about autism and literacy, but I have little knowledge of this subject, partly because I wasn’t diagnosed with autism till age 20. I also do not know which of my difficulties learning to read were due to blindness and which were due to autism. I believe, in fact, that most of my difficulties were due to a lack of motivation.

I was a fairly early reader of print. When I was four or five, my mother made little books with large rub-on letters. Each page had one word on it and the books had a theme, such as “house” or “school”. In the Netherlands, at the time, kids didn’t learn to read till age six. I could read first-grade early reader books by the time I entered the special education equivalent of first grade.

By the time I had to learn Braille at age seven, however, I started to hate reading. It wasn’t that I didn’t like books, magazines or anything with letters in it. In fact, I’d listen to children’s books and magazines on tape all the time. I just didn’t like, or rather I hated, learning Braille. It was probably that learning Braille reminded me of the fact that I was rapidly losing my vision. After all, I did read print books till I’d lost so much vision that even giant print didn’t work for me anymore. This meant that, at age nine, I’d still be reading early learner books because of the large print. I had too little vision for low vision aids.

I continued to hate reading Braille till I got a computer at age eleven. Even then, I strained to read from the screen, magnifying the font six to eightfold. When I really needed to use another sense than vision, I rather used my text-to-speech software.

It was probably the annoying, robotical voice of the text-to-speech software that turned me into a Braille reader. By the time I entered mainstream secondary school at age thirteen, I could read computerized Braille with relative ease. I however still rarely touched Braille books. This may’ve been more a matter of convenience, as Braille books are bulky.

I did for a while read Braille books again through the UK’s national library service for the blind when I was nineteen. Unfortunately, some books were lost while being returned, so I was refused further library services. Now I enjoy a mixture of eBooks, which I read with Adobe Digital Editions and my screen reader, and DAISY digital talking books. I still hope to someday be able to subscribe to BookShare, the U.S.-based accessible book sharing site, but as I said before, my doctor still hasn’t filled out the proof of disability form.

Everyday Gyaan

Also linking up with Literacy Musings.

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.

The Color Green

I have not been totally blind all my life. In fact, I could see some colors until I was around seventeen and still have grapheme-color synesthesia. This means that I see colors on the letters and numbers that I read on my Braille display.

The first colors I was no longer able to distinguish were green and blue, even though I have a vivid understanding of both colors in my mind now. I was about eight when I lost the ability to tell green and blue apart. Then, at around age twelve, I started seeing darker shades of green as black. For example, in summer, trees would appear black to me. This was one of the saddest experiences in my journey towards total blindness.

One of my favorite colors is green. Though I have a vivid memory and imagination of what it looks like, it’s hard to describe what green is if I had to describe it to someone wo was born totally blind. The fact is, after all, there is no way of perceiving colors except through sight. I, having had some sight as a child, can visualize what a color looks like when someone gives a description, whether that visualization is at all correct or not. Someone who was born totally blind, cannot visualize anything. Their brain just isn’t wired for it.

If I were to describe the color green to a totally blind person, I could of course name things that are green. I could say grass is green and trees are green in summertime. Green, in fact, is a color often found in nature.</P

I could tell them what feelings I associate with the color green. For example, green reminds me of a feeling of youthfulness, of fresh energy. Green, with its prevalence in nature during spring and part of summer, reminds me of the weather getting warmer. I don’t personally see green as a cool color, though many people do.

I could describe what colors I feel go well with green in clothing or the like. I for one happen to love the combination of green and blue, though I was once told when I wore a green and blue jacket to school in fifth grade, that the colors bite each other. I also love green with purple, pink and of course red. I don’t care for the combination of green and yellow or orange. Then again, these are personal opinions.

I remember once reading a book by Dutch comedian Vincent Bijlo, who is blind, in which the totally blind protagonist met the former tenant of his room. She told him that the walls were painted pink. He was in love with the woman so he said he liked pink because she did. This signifies the fact that blind people associate colors with the people and situations in which they hear about these colors. Pink is not a typical men’s favorite color, and blind boys may be raised with this idea. The man in Bijlo’s book clearly wasn’t. He had absolutely no concept of color, but he liked the color pink because his crush liked it.

Of course, it is useless to try to convey the actual image of color to a totally blind person. That doesn’t mean that blind people shouldn’t learn what color common objects are or what colors go well together in clothing. They may not be able to conceptualize colors. This however is also true of those who become totally blind later in life. I may be able to imagine what a color looks like, but I will still need to have sighted assistance for matching colors of clothing, for example, because the nuances of colors aren’t easy to describe. This is one reason why I usually wear black.

This post was inspired by one of the journaling prompts in 397 Journal Writing Prompts & Ideas by Scott Green. The prompt was: “If you were to describe the color green to a blind person, how would you do it?”

Stopping at two

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.

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.