From the Disability Wisdom Community: Tips and Tricks for Inclusive Event Planning

This week, I’m sharing some crowdsourced insights from the Disability Wisdom Discussion Group
A group member, who is a university professor, is planning a semester as a “faculty in residence” where she will live on campus and help to oversee student programming. She asked the disabled group members to describe strategies for making events and programs accessible. Here is the feedback she received, which will benefit anyone planning an event:

  • One thing that comes to mind is putting a phrase such as “if you have any accessibility needs, please ddon’t hesitate to contact so and so.” on the event advertisements. Others may not agree with me, but I take it as a good sign because I feel that the event host is at least being mindful that there are folks who may have accessibility concerns. Of course it depends on the event, but if I see such a phrase I usually contact and ask if they can make handouts available in an accessible format, ask if they have audio description available, etc.
  • Make sure there are some quiet events that people who get sensory overload can attend. Movie nights where the movies aren’t too loud, for example.
  • Sensory input boxes/fidget boxes/little toy things are wonderful. Have them at the entrance of the classroom. Yeah the students are technically adults. But having quiet spikey ball things to mess with in class saves a ton of people, not just autistic people, a lot of headaches.
  • Steep ramps: If you notice a ramp is ridiculously steep, say something to someone who can do something about it. Likewise, if you see some rooms are only available if you can climb stairs, say something. This isn’t just for classrooms. If Joe is having a get together on floor two of his dorm building, but no one bothered installing elevators, Jane is automatically excluded if she’s on crutches or is in a wheelchair.
  • Tree branches. Guide dogs are supposed to notice face-level tree branches. Not all do. Canes definitely don’t. Being whacked in the face by a tree sucks. Tell maintenance to get on face-level tree branches that are covering pathways.
  • Quiet zones. Going with my first two points. Having quiet areas on campus other than libraries are really important. Having a room with beanbags, a sensory box, and a giant SSHHH over the door. Bring your own noise-cancelling headphones. It can be a study room, whatever, but only quiet voices.
  • And letting students and other faculty know that you’re there as a point person about accessibility needs is good. There should be a disabled student services department, but they only cover certain students with certain specific needs. Generalized things are often overlooked. “Oh we have two dozen kids that all need golf carts to get from point A to point B. Best keep those golf carts.” Never realizing that maybe they should make an easier route between those two points.
  • Accessibility to information, places, and programs is very important, but it should be balanced with high expectations for all people with disabilities. We all need to find ways to contribute and to challenge ourselves if we hope to acquire any influence in any setting, accessible or otherwise.
  • I like the suggestions thus far. I would also like to add that when students are in control of programming they often don’t consider even the little things in their activities that might exclude people with various disabilities. Writing things on a piece of paper and having people guess who said what is fun, but how would a blind person or someone who physically can’t write put down their answers independently; How would someone with dyslexia be able to read it, or a blind person again. Movies often don’t have both captions and audio description. some physical games might be hard for a blind person, someone with a mobility issue, or someone who gets overwhelmed by a lot of motion and noise to deal with. And sure people can partner up with others for some of this stuff, but then it’s awkward being the only group while everyone else is playing individually. Spaces and accommodations need to be in place for students to even come, and I like the idea of students taking the lead in planning, but their plans also have to consider accessibility, too.
  • Also, on an unrelated note, it might be a good idea to also put a note about allergies on flyers. SOMETHING like, if you need any accommodations due to a disability or food allergies, please contact insert person here. THAT way you avoid the awkward issue of having pizza and Joe can’t have dairy, and Sally has a severe gluten allergy.
  • In person event can be a lot for those who struggle with social anxiety or social skills. You may want to include events that involve interacting online, like a gaming night or some kind of online scavenger hunt. This may help with accessibility issues for other disabilities as well.
  • So My biggest point of advice I learned from an amazing disability studies professor is that there’s absolutely no such thing as fully accessible to all because disabled people have varying access needs i.e a blind person vs a deaf person vs someone with sensory difficulties. All of this to say that you can always think of hickups with events, but as long as some key things are hit on, you are generally okay. Also, a variation of loud vs quiet etc events could be a way to include people of varying access needs in different events. So I fully echo the absolutes of always hosting in a wheelchair accessible location because that doesn’t inhibit anyones access needs and can only be inclusive, and always adding on top of event pages that if people have access needs/accommodations not to hesitate to email/call. Another big thing to me is that advertising not just be done on bulletin boards, and that advertising happen electronically.
  • Pick a room that’s wheelchair accessible. Picking a room that has tiers instead of seats is not wheelchair accessible. If wheelchairs and other mobility devices are forced to the back of the room make sure they can hear. Do you allow note taking on a laptop? Some people may need to do this. Is an interpreter available if needed? Braille writers click. Can you tolerate it? Is your handouts screen reader accessible?

From the Disability Wisdom Community: Is There a Disability Culture or Cultures?

This post features another discussion we had on the Disability Wisdom Discussion GroupA group member asked whether or not there is a such thing as disability culture, or impairment subcultures such as “blind culture” and “autistic culture.” The question generated a variety of opinions which underscore the complexity of the issue:

  • I intuitively feel like there is a blindness culture, although I’ve never quite been able to pin down what that means. I’ll give this some more thought.
  • I feel like there’s a blindness culture, like,an appreciation of non visual techniques and beauty. I have a hard time connecting with it a lot of the time.
  • First time I’ve heard of it.
  • so… Wherever there is a group of people, there is a culture or subculture. Families have their own subcultures. Companies have their own cultures. Groups of people who get together to discuss books have their own subcultures.If there are groups of blind people, then of course there is blind culture.

    I think it may be less easy to tease apart what makes it distinct, because unlike deaf culture there are no super easy differences to point to, but that doesnt mean its not there.

  • culture or subculture is the unique experiences and understanding within any group of people, so yes, it may not be as defined, but it exists.
  • I was always led to believe that something could only be a culture if it had its own language/form of communication. Braille doesn’t count because it is simply a different representation of an existing language. Under hat definition no, there’s no blindness culture & the sense of community we feel is a sub culture.
    Personally I’d. Say language is not necessary to define culture & communities can have their own cultures.
  • I am more open talking about blindness concerns around other blind people but I don’t think it is a culture. I think there may have been more of a blindness culture when most blind people attended a school for the blind but that hasn’t been the case for many years.
  • So culture is defined as a group having its own language, customs and religion. Since disability alone does not include these, I argue that we do not have a seperate culture. We are a part of whatever culture we live in. However, there is the disability experience, such as dealing with discrimination, using alternative tools/methods, lack of accessibility, the psychology of being disabled, etc. These are things that able bodied people don’t have to think about or deal with, except maybe the discrimination part. So while we live in the same culture as those around us, our experience can be different because of disability.
  • There is definitely autistic culture. It includes mores such as, respecting everyone, only 1person talking at a time, asking pronouns, stimming openly, asking before touching anyone, asking what someone is feeling and not relying on their expressions, giving people lots of space, being patient as people communicate, and being really honest. Autistic people are not offended by honesty the way other people are. If I ask you if you like my shirt and you say well it’s the color of bile that’s good to know I hadn’t noticed. I really wanted your opinion. I don’t ask if I don’t want to know things.
  • Personally, I do think that blind people have their own customs, which falls under the scope of being a culture. Saying your name instead of raising her hand to speak, announcing yourself when you enter a room in some places, some stims, and using technology bye unabashedly having your voiceover off silent or earbuds not constantly in your ears to hide the sound are part of the culture. They dislike of being touched without warning or permission is something that I think we share in common with the greater disability culture. I was pointed to the same very narrow definition that [group member] discussed while I was in middle or high school, but I personally do not agree with it. I think that culture has evolved to mean something very different in today’s day and age, and that definition just doesn’t suffice anymore.
  • If there were epileptic colonies, separate schools we had a culture. I’ve often wondered what happened to the former ‘program’ of an elementary school I had attended. The program used some now dated language. But I often thought it was ‘appropriate’ the elementary had sea paintings on the walls of that program when I had hydrocephalus (water on the brain) as one of my conditions. It made me feel beautiful as a little girl.
  • I think people often confuse the word community and culture. There are many many different communities inside a single culture. Just look at the United States. However, if you narrow down by culture, the number gets exponentially smaller. Same with disability. There are many communities full of people with disabilities, including this one. Culture wise, I don’t think so. In order to have culture, you need to have language, social norms, traditions, and many other things that I am forgetting right now. We, as Blind individuals, don’t have a language. Braille is just a code. It can be applied to any language. We do have slang, but every community has some sort of slang. Just look at the corporate or educational community as an example. We may have a few social norms, like don’t grab a guy dog that’s not yours, but in general we live by the same social norms as the rest of the different cultures that we are part of. And finally, we don’t have a lot of traditions that we share amongst each other. We may have a summer convention, but not everybody participates in that.
  • so if language determines a culture, for those who do not know this, but persons who are DeafBlind might use “ASL” but there is TASL, which is the tactile version, is it different from ASL yes, does it have its own unique signs and ways of conveying information in a tactile version, yes. And PT protactile, is its only expression of language too. Yes, I realize that the question was targeted towards the blind community, but as a deafblind person, not only do I have one foot in the blind community, but in the deaf community and a third in the deafblind community. so in essence DeafBlind is a sub community of the blind and deaf community. Yes, we have our own customs, our own norms, and so on.

From the Disability Wisdom Community: What is One Thing as a Disabled Person That Would Make Your Life Better?

Around the time I launched this blog, a few friends and I started the Disability Wisdom Discussion Groupon Facebook. The group was created as a forum for disabled people and nondisabled allies to talk about the disability experience, educate one another, and work together to promote accessibility and integration. Over time, the group has grown to 724 members, and it has become a kind of support group for people with disabilities from diverse racial/ethnic, national, age, sexual orientation, and ability backgrounds, as well as a learning forum for allies.
Earlier this week, a group member posed the question, “What is one thing as a disabled person that would make your life easier or better?” I am sharing the diversity of responses here, exactly as they were written (I have only removed duplicate responses). Some of the answers may surprise you, but it is clear that many of the things that would make our lives better are things that we have the power to build together as a society.

  • It’s not so easy to just come up with only one thing, because there isn’t just one thing that might need correcting or improving. We can start with this though. How about if people view me as just another person, not a sexless child trapped in a man-shaped body, not some kind of magic alien, and not their designated good deed for the day, plus, I would like people to understand that good intentions are not more important than general manners and respect for all boundaries, be they physical, mental, emotional or anything else. This should at least be a start.
  • Probably a better acceptance that I’m not unusual or vastly different, and that I’m perfectly capable of being independent and able. That being said, a car the blind can drive. Man, how many times in a week do I utter the phraise, “If I could just drive right now…” 🙂
  • Or self driving cars so everyone could drive.
  • Reliable transportation.
  • Less prejudice and more respect from non-disabled people. Broader recognition that we are the experts on our own needs and experiences and of disability as a minority status, not a tragedy.
  • Basic respect.
  • equal, quality educational and employment opportunities, for young people especially;
  • My life would be a lot easier if people considered me a competent adult
  • Truly affordable, accessible housing. I’m drowning here. I’ll be homeless if they raise the rent next year.
  • Philosophically, my life would be better if people didn’t see disability as an “all or nothing” and see it as the spectrum it is…and respect people who live in the grey areas of that spectrum and the fact that we use methods used by both ends to accomplish our means.
  • If one is developing a product to help me live a better life as an individual who is legally blind, I would absolutely love to have a car that I could drive…or at least a mode of transportation that is set and ready to go when I am set and ready to go. I’m tired of always having to live on someone else’s schedule. Sure, Uber is available at the tap of a button but I still have to see if a car is available and wait on the driver to accept the ride request and arrive.
  • If people understood alternative ways of living
  • Improved public perception of people with disabilities.
  • Some kind of way to put a gps beacon in front of a building so that ubers and lyfts could more easily find it.
  • Service dog awareness. Teaching public places the two questions,and informing them of their rights.
  • More cross walk signals that beep/talk
  • Informing school systems that by limiting those with disabilities ultimately sets them up for a culture shock
  • Making a unified spot for bathroom signs with Braille, I always have to search for those things
  • first just more education about disability in general. Like for example, I am DeafBlind, and when people hear “DeafBlind” they think of Helen Keller. I am not HK, nor have I ever been, nor did I ever meet her. DeafBlind is does not necessarily mean that a person is totally blind, totally deaf, its a spectrum like every disability. I would like to see more role models of persons who have disabilities themselves. PWD more visuable. And that making apps and tech is not just for persons with disabilities. in the long un it is beneficial for everyone.
  • People not staring and stereotyping, but put others above themselves by helping us out if needed.
  • I’d like to see disabled parents congratulated on their pregnancies and births and not doubted, watched like hawks, and unfairly targeted by Child Protective Services and by people who call Child Protective Services three to four times more often because of unfounded worries about the safety and well-being of children who might be parented differently, but not badly.
  • Oh, and right now, my big beef with the non-disabled world is nut job drivers who turn right on red at stoplights, because one of them came within three or four inches of taking the nose off my sweet, gentle guide dog last week, and now she won’t accept her harness. She’s suffering from post-traumatic stress–yes, dogs can get that disorder as well as humans–and if I can’t get her past it with help from my school, which isn’t looking good so far, she may have to retire, all because of one reckless jackass who couldn’t wait five seconds to get where he was going.
  • I would like to see teachers trained on how to teach children with ADHD and LD in mainstreamed environments in ways that are beneficial for all children including able bodied children.
  • Money
  • Requiring a disability studies class, taught by disabled people, as part of the general high school curriculum for all public school students.
  • In a Facebook discussion about accommodations for people with disabilities, somebody had the a DOS city to say disable people are cater to in this country. I was so stunned and didn’t even know what to say. I said there’s a difference between creating equal access and catering to.
  • I can’t do anything about the rest of the world aside from gently educate and keep living my life. I’d just be happy with a self-driving car. 😀
  • Less voices that criticize me and mental health stigma
  • We still need guidelines for accommodations in higher education. Their introduced, but I would like to see them go through all the way into reality. Also, I completely agree with everything else that has been said from other blind commenters It always saddens me to hear about when guy dogs develop PTSD because of bad drivers, but I would also like for drivers to have stricter laws in place for both guide dog users and Cain users. A dog might not also be harmed in the process, but I have a few crossings I have to use on a regular basis where I’ve almost gotten taken out by a car that turned when they weren’t supposed to. I’ve resorted to waiting until I hear a car go all the way through the intersection but if I wait sometimes a whole slew of cars will turn one after another because i guess they don’t think I’m aware that legally I should be walking across the intersection at that point, and I have to wait for the next cycle and hope it doesn’t happen again. It would be nice if driving schools actually made sure people earned the privilege to be on the road by demonstrating a true understanding of the rules. On the other hand, a car that blind people can drive would be very nice.
  • Also, braille!!!! OK, sorry, I love braille! Young children who are blind or visually impaired should be taught Braille. Even if you have enough vision that you are also taught print at the same time, you should be taught Braille as well. Once the print get smaller, and there is more of it, someone with a serious visual impairment will have a hard time reading. I hate seeing people my age struggle to read. Plus, the more people who read braille, the more it will be excepted as a reading medium, and the more available it will be.
  • Audio books are just as legitimate as printed books. Not just for blind students. Dyslexic students, audio learners, kids who spend a lot of time in the car… There’s absolutely no reason that 30 minutes of reading should be spent staring at pieces of paper rather than having it narrated to you. (Or sitting with a parent reading to you, or whatever.) It took forever for my kid to learn that they *liked* books because being forced to read X number of minutes didn’t include audio books even though they liked listening to audio books all the time.
  • Doctors who actually listen. “I’m in pain.” No I’m not seeking narcotics. I’m in actual, real, pain. No, tylenol does absolutely nothing. Why on earth would you give me a prescription for tylenol. I have greater strength tylenol from over the counter than you gave me a prescription for. I physically cannot walk right now without crying. Tylenol isn’t going to do anything. Can we maybe figure out WTF is wrong? If you tell me to lose weight I may punch something.

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!