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Blind in the City: Exploring Shades of Blindness, Part 2

Last week, I wrote about my perception of colors.
this week, I want to share some comments from others who are blind or have low vision. As you will notice, color, like other aspects of the visual, can be very subjective, and much of what we perceive visually is a matter of how our brains interpret the input.
Note: All comments are anonymous, and are printed exactly as written.

  • I have a love-louve-hate-love¬ relationship with color. When I was small, I could see color, and I remember being regularly immobilized with fascination and wonder. I had no detail vision, but I could see expanses of pure color, and I would stare mesmerized at the blue sky or a field of snow or up into moonlight or even into blackness. I lost all light perception in middle school without mentioning it: everybody already assumed I was blind, I think and nobody much wanted to talk about it. I thought not mentioning this was one of the “rules. interestingly, infuriatingly, perhaps due to retina damage, what I visually perceive now is unpatterned color which I can control to some small extent if I concentrate on it. I imagine that if I focused on this, I could conceivably control it more thoroughly perhaps, and invent appropriate colors: for the things I imagine around me, rather than blobs of orange and green, could I turn my face skyward and experience the blue I remember? I don’t know, and I haven’t taken what I imagine would be the considerable amount of energy necessary to implement this: if it would even work. It feels like a weak, sad substitute for the “real thing”, and I rarely mention it because people react weirdly. It also, perhaps even more strangely from the sighted person’s perspective, becomes too bright when I have a headache and is profoundly distracting!
  • For what it’s worth, I’ll offer my take on this. Colors aren’t real properties of external reality, they are only phenomenal properties of perceptions. A red object isn’t made of red atoms or red molecules, for instance; what sighted people refer to as red is the effect of the texture of the object, which is responsible for certain frequencies of waves to be refracted from its surface. Photons in these frequencies strike the retina, where they initiate an electro-chemical reaction, which, when transmitted through the optic nerve, is associated with a perception sighted people refer to as red. Neither redness, nor any other color, is “out there.”
  • I’m totally congenitally blind with some light perception. Color was nothing more than an abstract concept for me, until one night eight years ago. I was smoking marijuana at a family friend’s lake, and he happened to check the time on his IPhone. I had a startle response to the light, which is unusual for me. My family friend, who is a psychologist, hypothesized that the marijuana was having an effect on my vision, so he used the strobe light app on his IPhone to experiment. I was not only able to sense the light, but I could tell when it was changing. “Bigger!” I said. “Smaller! Sharper! Smoother!”” My friend explained that the changes I was detecting were actually the strobe light changing color. I was perceiving color as texture. Black was a “big” color; white was the smoothest color.
    I later learned that this phenomenon is called synesthesia. .
    As a poet with an intense interest in the visual, I was delighted with my newfound knowledge, however fleeting it was. And, as a researcher, this discovery marked the beginning of my journey to understand how marijuana impacts vision.
  • I, like you, have light perception and occasional light projection too. By the way, I loved your explanation of these, as I never knew you could have varying degrees of light projection and now I know why I test as having light perception only at the eye doctor’s but can detect lights, windows, etc. I however had some more vision, including color perception, as a child, which diminished slowly. At five, for example, I was naming lots of shades of colors. At eight, I started confusing green and blue, and by twelve, I had lost most color perception – interestingly red being the exception. I by this time perceived darker colors as black, in fact. As a person who had color perception until age twelve, and who is clueless about music, I never associated colors with sounds, feelings, etc. I did and still do, however, have the reverse experience, sort of: I have projected grapheme-color synesthesia. This means that, when I feel a letter or number on my Braille display (or imagine it), I see a corresponding color in my mind’s eye. I have a feeling that my synesthetic colors have become a little less bright over the years, since by now it’s been 20 years since I last saw color properly. As for your reference to the wavelengths of colors, I could never remember those and they just felt like physics jargon to me.
  • I had partial sight in one eye until age 11, sight enough to read large print and ride bikes. After retinal surgery, my parents would hold up plastic children’s building blocks and ask me what color they were. I remember clearly seeing red, but squinting at the light-colored ones, trying to decide if they were white or yellow. My vision deteriorated quickly after surgery until only sunlight perception remained. Despite having color memory, colors are very simplified for me now. I couldn’t describe what cyan is if my life depended on it. I never had that color pointed out to me as a child. Kelly green? Even teal is a very faint memory, and I’m not sure I’m remembering it right. But yellow-green? That’s the color of my birthstone rings I had growing up. That was that snot-colored crayon I didn’t like. I remember cornflower blue, it was that really pretty light blue one. Violet? That was the crayon I hated because I thought it was going to be red, but it colored this ugly purple shade. I have synesthesia with music and voices meaning that sound has color attached. This trips me up on occasion, because the key of D-major is a bright purple, whereas G-major is a darker, richer purple. When I hear these two keys, I have trouble differentiating them. The same is true of A and B-major. Their colors are too similar, and I get confused about which key I’m hearing. I don’t have any issue picking out pink C-major from bright light green F-major. My synesthesia blurs the line of gender-conforming colors. I work with a man who has a pink-toned voice. One of my female friends has a nice light blue shade. I even know one person whose name appears white to me when I hear it, but the voice is tan. For me, colors are an uncertain, fading memory. My wrap skirt is magenta. Am I remembering the character Magenta from Blue’s Clues correctly after all these years, or is it violet I’m picturing?
  • I had partial vision growing up and always drew and colored. The Crayola 64 pack was my color palate and I still know those crayons by their 1970’s names. Forest green versus Pine Green, Pea Green versus Yellow Green. Burnt Umber, Raw sienna, etc. I organized my crayon box in color families. My vision was fairly 2-dimentional with very little depth perception but color was definitely there and still is. When I lost most of the color vision to advancing glaucoma, my world was a mess for a while as one medication literally took my color vision over night. Things were extremely grayed out then went completely monotone. Then my brain just took over and began assigning colors to things and places. I also have synesthesia and every sound, letter, number, phoneme, morpheme, has a color.
  • Since I used to be sighted, I totally understand color. It’s frustrating when shopping for clothes or home decor, and I know exactly what color and shade I want, but I ultimately have to trust someone they understand my vision. And when shopping with someone who doesn’t know how to describe color is very frustrating. I had a friend tell me a pair of shoes was Target red, so a true, scarlett red, but turns out, they are a dark coral, so between a deep orange and pink. I don’t shop with her anymore, ha. People always want to know what I “see.” I do have light perception and can see shadowy blobs. But I describe what I “see” as TV fuzz. I have white, blue, yellow and red pops of color, with frequent flashes of white light and swirling rainbows. I’m pretty much on an acid trip all the time LOL!

Blind in the City: Exploring Shades of Blindness, Part 1

One of the questions I get asked most is, “So, do blind people just see black?” or the related question, “Do you see anything besides black?”

 

The short answer is that blindness is a spectrum, from total absence of light to the ability to read print letters under some circumstances. Along with this, some of us can’t answer these questions very well, because we don’t know what the heck “black” looks like.

 

Today I want to talk about my experience of color, and how those experiences were formed in the absence of reliable color vision. Next week, I will share some comments from others with varying levels of color vision, to show the range of experiences people have.

 

My vision has been stable throughout my life, and consists of “light perception” and occasional “light projection.” This means that I am aware of the presence of lights and can judge their position and relative intensity (such as pointing at the sun, and detecting when it ducks behind a cloud). I can also detect an object’s motion at close range, and can (sometimes) tell if a light-reflective object is in front of me. However, for the most part, color is absent from these perceptions. My awareness of a light’s or object’s presence is usually a binary; the image either is there, or it’s not. Any two lights will look basically the same to me, aside from perhaps a difference in brightness.

 

There is one rare exception to this rule. Once when I was little, my dad shined a flashlight in my eyes, and I instantly detected something different about the light. I felt a pleasant warm sensation in my eyes, reminiscent of the taste of a curry or other pleasantly spicy “warm” dish, which I had never experienced before. My dad told me this was the color red. A quarter-century later, I got the same warm visual sensation when gazing upon the red ornaments on my in-laws’ Christmas tree, although try as I might, I could not detect the complementary green ornaments. Despite this tiny pocket of red-color vision, I can’t tell if you’re wearing a red sweater; it seems to be limited only to bright lights.

 

So, without any ability to identify the colors of things, how did I learn about colors?

 

My early color learning was purely memorization. Roses are red; the sky and ocean are blue; grass is green; snow is white; etc. I didn’t understand what these color labels meant, but this was important knowledge, as it allowed me to understand sighted people’s conversations, and color descriptions in books. I also memorized facts about color combinations; mixing red and yellow paint yields orange, for example, while blue plus yellow makes green. Again, it didn’t really make sense to me, but it was interesting information.

 

My color understanding took a big leap when I learned about the electromagnetic spectrum in eighth-grade science class. I learned that colors correspond to varying wavelengths of light. Red is the longest, slowest wavelength, while violet (purple) is the shortest, fastest one. Importantly, I was able to map this on to my understanding of sound: color is analogous to pitch, with reds and oranges resembling the lowest notes on the piano, while blues and violets correspond to the highest notes, and yellows and greens sit in the middle.
I also learned that white includes all the colors in equal proportion. This, I might imagine, could resemble a melodic blending of all the possible pitches, although I’m not sure how people get the “smooth” sensation of seeing something that is purely white.

 

But, then, what is black?

 

Black objects reflect no light, I was taught. So, logic would suggest that if a black object reflects no light back to the eye, and what we see is based on reflected light, then black objects must be invisible. But, clearly, this is not the case. Entire books are printed in black ink, and sighted people can read the black text without issue. And, I knew that when I wore my black dresses, people could see that I was clothed.

 

I literally completed a Ph.D. in psychology without really understanding what black looks like. A partial answer finally came during a discussion about something unrelated on Facebook, about two years ago. I asked how people can read books written in black ink if black things don’t reflect any light. An acquaintance of mine (who is partially blind, has color vision, and happens to be a childcare provider-so I guess she knows how to explain things to naïve adults as well as children) told me it’s like the indentations made by a cookie cutter. Black appears as a pattern of absences against a contrasting white (or, perhaps, bright-colored) background, like the visual version of carving out a tactile heart shape in a slab of clay. Just as you can’t get the indentations without the clay, you can’t get black without a contrasting color. Totally blind people, then, definitely don’t see black; and in fact, the ability to see black must rely on the presence of enough color vision to detect contrasts between foreground and bakcground. Being totally blind, then, is more like what we see with our elbows or the backs of our heads.

 

The concept of color still amazes me, almost like an extraterrestrial phenomenon. It’s something that has clear emotional and practical import for most of my fellow humans, but with the exception of red Christmas lights, is something I can only understand in the abstract. I still have limited understanding of which colors should or shouldn’t be paired together in fashion choices. I get the sense that it’s OK to pair similar colors, and that anything can be paired with black, white, and some shades of gray or brown. For the most part, I’ve managed to bypass the issue by choosing “neutral-colored” bottoms, wearing one-piece dresses, or getting advice on specific outfits from people who can see. This is an area of knowledge I hope to expand on, so I can become more intentional with my color choices.

 

As I conclude this post, I want to emphasize that there are as many experiences of color as there are blind people. For example, I know several blind people who are quite fashion-conscious, and some who have strong emotional associations with certain colors. Many of us have experienced changes in our color vision over our lives, which influence our thoughts and feelings about color.

 

Do you have some degree of blindness or vision loss, and an interesting experience with color? Tell us in the comments, or email me at arielle@disabilitywisdom.com.

Disability Wisdom Fall 2017 Update!

It’s been a little over six months since this website was launched. When the website was launched, I started sending out an E-newsletter to my professional and personal contacts every three months describing what Disability Wisdom has been up to. The newsletter isn’t a full listing of projects that I work on with Disability Wisdom, but just highlights a few notable research, training and knowledge translation projects. I try to share a few free publications as well.

Below is the Fall 2017 Disability Wisdom newsletter. My apologies to those of you who have already gotten this in your inbox, but I wanted to make it available to other blog readers who haven’t yet subscribed, and those of you who are reading my website for the first time. Please share a link to this post, or copies of the free downloadable publications, with anyone who might be interested.
Email meif you’d like to receive the quarterly newsletters in your inbox.

For further updates, be sure to follow Disability Wisdom on Facebookand twitteror join the Disability Wisdom Discussion Group.
Enjoy, and thanks for reading!

Dear friends and colleagues:
Thank you for supporting Disability Wisdom Consulting. It’s been a pleasure to spend my days learning and teaching about the disability experience, and getting to work with so many dynamic people who are dedicated to making our world a more inclusive place. Below are some quick updates on projects I’ve been working on during the last three months, along with two resources you may wish to share with your networks.

Research Highlights
Exploring Social Assistive Technology Preferences:
This year, I’ve had the pleasure of working with the Center for Cognitive Ubiquitous Computing(CUbiC) at Arizona State University. CUbiC is developing haptic aids that could help convey information in an accessible way to users who are blind or visually impaired, including information about their own nonverbal signals and mannerisms during a conversation. Working with CUbiC, I surveyed 77 adults who have been blind since birth to find out what strengths and challenges they experience with nonverbal communication, as well as their feelings about using a haptic aid for social interaction. We hope to publish the findings soon, and will share a summary with you at that time. We also hope to get additional feedback from the 300 individuals who agreed to participate in future studies with us.
Are you interested in using survey tools to get input from people with disabilities? I can work with you to design, program, launch and analyze surveys customized to your needs and goals. Contact me for more information or to set up a meeting!

Training Highlights
Top Ten Tips for Inclusion:
I started out as an inclusion trainer when I was invited to develop some content for the Union for Reform Judaism’s Disabilities Inclusion Learning Centerthree years ago. Over the past few months, I’ve had a wonderful opportunity to continue working in the Jewish community with URJ and with Hillel International,the “foundation for Jewish campus life.” Hillel recently asked me to build a “top ten list” of inclusion tips that any organization can implement to promote inclusion into all aspects of its work. Here is the Top Ten sheet that we developed. The tips begin by addressing person-to-person interactions, and then progress to the organizational level. On the second page of this double-sided handout, you will find links to some of the largest disability advocacy and support organizations in the United States, which can help answer questions about disability-specific issues. Feel free to share the attached resource broadly.
Top Ten Inclusion Tips

Knowledge Translation Highlights
New Fact Sheet: How to Make Healthcare Accessible for All
I wrote this fact sheet for the Rehabilitation Research and Training Center on Aging with a Physical Disability at the University of Washington. Written for healthcare providers, it highlights the most common access barriers that disabled patients may face in the healthcare setting, and practical ways to remove them. Read the fact sheet here:
How to Make Healthcare Accessible for All

Website and Blog Highlights
Check out the Disability Wisdom Logo!
Disability Wisdom has a new logo! You can see it in the banner on this blog.
(Picture description: stylized picture of a head with feathers or spikes (depending on your interpretation) extending in all directions in a rainbow color pattern, with the words “Disability Wisdom Consulting” below the head, and the braille letters “dw” at the bottom.)

Blog Update:
Check out some recent blog posts: Learn how Disability Wisdom got its name, read about controversies around “curing” disabilityand links to some excellent articles on disability issues.
Want to subscribe to the blog? Click the “follow” icon in the lower right of the screen (link labeled “follow” for screen reader users), or email meat Arielle@disabilitywisdom.com to be subscribed by email.
Until next time,
Arielle Silverman, Ph.D.
Disability Wisdom Consulting
Phone: 240-630-1154
Email: Arielle@disabilitywisdom.com
Web: www.disabilitywisdom.com
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ADA National Network Offers Support and Resources for Accessibility

Today I’m at the annual conference for the Mid-Atlantic ADA Center
which is one of ten regional centers in the ADA National Network
So, for this blog post, I just want to point interested readers to the ADA National Network as a resource for information and training about the ADA. The ADA National Network offers technical assistance to employers, business owners, and others serving the public about the provisions of the ADA and how to maximize accessibility of facilities and services.
In particular, the ADA National Network has a helpful fact sheet page
with easy-to-read, printable fact sheets in English and Spanish on a wide variety of accessibility topics. Please share these important resources in your communities.

Producing Positive Disability Stories

I’m on vacation with my family this week! Instead of preparing an original post, I wanted to share an excellent article from a fellow inclusion consultant, Haben Girma
Haben was the first deaf-blind person to graduate from Harvard Law School, and was recognized as a White House Champion of Change by President Obama. A talented storyteller herself, she teaches people to frame difference as an asset. In an age where disability is often featured in print and online media, her practical tips for producing positive disability stories are worth careful consideration.
Producing Positive Disability Stories: A Brief Guide