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Access Intimacy: The Missing Link

November is a time when we focus on gratitude and appreciating the good things in our lives. I’m going to write a longer post about gratitude next week, when things are (hopefully) not piled as high on my virtual desk.

This week, I want to share a blog post from Mia Mingus, a writer, educator and community organizer who identifies as as a queer physically disabled woman of color. Mia reflects on the rare experience of “access intimacy.” Simply put, access intimacy is “that elusive, hard to describe feeling when someone else ‘gets’ your access needs.” While it can be confused with other forms of intimacy, it is distinct, and can arise between strangers. When we live in a world where our access needs are often ignored, or met only after a struggle, finding someone who provides appropriate access in an organic way can be a true treasure. I try to intentionally feel gratitude for those moments.
Access Intimacy: The Missing Link

When You’re Disabled, Emergencies Pose An Even Greater Risk

In the past few months, we have seen too many tragedies, both natural and man-made. It’s natural for all of us to worry and wonder how we can prepare ourselves for the next emergency. But, for those of us with disabilities who communicate or move in different ways from the rest of society, emergencies can bring unique challenges. In the article below, Kit Englard describes the measures she’s taken, as a DeafBlind woman, to ensure she receives needed information during an emergency. She also describes the actions that ordinary citizens can take to support people around us who may need a little extra assistance.
When You’re Disabled, Emergencies Pose An Even Greater Risk

What’s That? Explaining the Who, What, and Why of your Social Media Pics

Imagine you’re on a business conference call. You’re working remotely from San Francisco, and you have a call with three colleagues, all in the same office in NYC.

When you dial in to the call, two of your colleagues are chatting, waiting for your boss. “Little Henry’s growing up so fast!” one of them says. “He just started doing this cute thing where he goes like this, and then he’s like, does that thing….” The other colleague giggles. Meanwhile, you have no idea what they’re talking about, because they’re gesturing to each other and this isn’t a video call.

Your second colleague chimes in, “Yeah, look at my daughter in the little bunny outfit, isn’t she cute?”

Then your boss gets on the call. “Let’s talk about this quarter’s performance metrics. Here’s a chart showing our company’s productivity for the last three months.” Again, this isn’t a video call, and no one bothered to send you the chart ahead of time. None of your three colleagues seem to recognize that you have no clue what they’re looking at.

Sounds awful, right? Well, this is often the experience of blind and low-vision social media users. Oftentimes, our relatives, friends, or colleagues post images with little or no explanation. Sometimes entire photo albums may go undescribed. People may share flyers for important events on Facebook, but instead of sharing the actual flyer document, they share a photo or screenshot of the text, which screen readers cannot decode and screen magnifiers may not be able to magnify. We notice that our other friends are commenting on those images, and we’re left out of the discussion. This rarely, if ever, occurs intentionally; in fact, sometimes even people who go out of their way to include the disabled person sitting next to them, or who fight for their children with disabilities to be included, forget to ensure access when they share content electronically. Others may remember, but not know how to ensure access.

A first step to inclusion is recognizing from the outset that people with disabilities may wish to interact with material you share, and being proactive about making that content accessible, instead of waiting for someone to stumble on your content and ask for access. In this post I am going to offer a few concrete tips for making your content accessible to people who are blind or have low vision. We will address other disability concerns, such as captioning audio, in future posts.

We often share pictures on social media in order to tell a story or capture an event for others to experience. Blind people cannot see the pictures, and people with low vision may not be able to make out all the details. Photo captions allow us to experience the story you are telling in your own words. I wrote a bit about using photo captions in this post. Critically, to tell the story to a bblind person, a photo caption needs to make sense on its own without the picture. Although many people use photo captions on Facebook or hashtags on Instagram, they sometimes write captions that are so cryptic as to be meaningless without the picture. If you aren’t sure whether your caption is descriptive enough for a blind person, here’s a test: Try sending yourself an email with the caption in the subject line, without the accompanying picture. Look at the email and see if it makes sense to you. If it doesn’t, it probably won’t make sense to someone who doesn’t know the story behind your photo post.

Here’s an example:
Bad caption: She loves dressing up.
Questions: Who is “she”? What is she wearing to support your claim that she loves dressing up? Why is her outfit interesting enough to post?
Better caption: Little Annie loves wearing her pink dress to school.
This tells us who you’re showing off, what’s interesting about the photo of her (her pink dress) and why it’s interesting (it shows a bit about her personality, she loves wearing it to school).
Optional, more descriptive caption: Little Annie loves dressing up. (Description: picture of a little girl wearing a pink dress with a flower pattern).

Some people write wonderfully detailed photo descriptions in the caption box. These are great, but not essential in my opinion. When I read stories on social media, I’m mainly interested in the who, what and why behind the images included. Who’s in them, what are they doing, and why are they included? Often those questions can be answered in a one-sentence caption.

It’s important to caption screenshots as well, because screen readers do not recognize their content. If you can’t get the original version of a flyer or some other text shared on the Web, or a link to the original content, type the text into the caption box.

Again, the best-case scenario is to make your posts nonvisually accessible from the outset. Occasionally you may forget to add a caption, run into a technical problem, or if you are yourself blind, you may genuinely not know how to describe something. In those cases, if you can, edit your original post and add captions once you have discovered your oversight or received the necessary information. You may also invite commenters to expand upon your description.

Ensuring nonvisual accessibility on your personal social media pages will help all of your friends and followers feel included in the conversation. If you run an organizational page or post to a group, Ensuring nonvisual accessibility is even more critical, because the posts there will set a tone for the entire community. Describing visual content is one way that we can make the world more accessible, one image at a time.

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.

About Autism: From the Autistic Self-Advocacy Network

On last week’s blog, I mentioned an offensive “awareness” video about autism, which portrayed “autism” as a creepy voice threatening to break up families, take all their money, and destroy their children. While that video may be exceptional, information about disabilities on the Internet is often depressing, sometimes inaccurate, and rarely vetted by disabled people. Autism, in particular, has been subjected to many misunderstandings as part of its quick ascent into the public eye.

So, I was glad to find this fact sheet describing the features of autism, published by the Autistic Self-Advocacy Network(ASAN). ASAN is run by and for autistic people, and aims to “empower autistic people across the world to take control of our own lives and the future of our common community.”ASAN treats autism as a “neurological variation” and describes common features using unbiased language, emphasizing that no two autistic people are identical. Consult this fact sheet if you want to learn about autism or educate others, and while you’re there, check out ASAN’s public policy work, much of it directed at issues affecting people across the disability spectrum.
About Autism