Can I Explain Insidiousness to My Congressperson in One Minute or Less?

Bar graph showing most common web accessibility barriers. See complete description and source at end of article.

Talking to Congressional representatives always makes me feel bad. Today, after I talked to my Congresswoman, Susan Bonamici (D-OR), I was trying to pinpoint what, if anything, could be done about it.

Rep. Bonamici was very polite, interested and showed appreciation for what I and my 3 colleagues had to say. We were promoting four bills that mostly had to do with digital accessibility for blind people in voting, the digital environment, and medical devices. She politely listened and promised to follow up on our fact sheets and give us consideration. I have no reason to believe she won’t. But that is what they always say.

Sure, there was that one state senator, who seemed appalled by my somewhat less articulate, less graceful blind colleague who nevertheless knew what she was talking about. He already referred to her in third person when he suddenly interrupted her as he spat out, “Why is she so much more handicapped than you?!” She sputtered mid sentence, and I tried to smooth things over with some quick platitude about how we are all different and have different experiences, while emphasizing how knowledgeable she was about the subject matter at hand. Some make the usual faux pas of grabbing us or our mobility devices without asking, talking to an interpreter about us in the 3rd person, or asking how we managed to find their office by ourselves. But in general, when I advocate in state or federal government, I am listened to politely in the very fast 10 or 15 minutes I am given and then they move on. I leave feeling like they don’t really understand anything we talked about. And that is because, well, they usually don’t.

I won’t pretend to be the best capital hill advocate in the world, but I think I am adequate. I don’t think it is me. I think it is the nature of the beast. Of getting your 10 or 15 minutes to rush through the essence of the issue you are advocating for while not impeding anyone else’s time, much less the congress person or senator. You can only scratch the surface of any issue. The best you can wish for is that you put a face on the issue, maybe touch them personally or pique their curiosity so they want to talk further with you and find out more.

I watched as my partner, who is an expert in web and app accessibility and a first-timer at these meetings, was asked what he does when a website is inaccessible. Because I know him so well, I could literally almost see him pause and ask himself “What DO I do when a website is inaccessible?” He said something about having to ask a sighted person for help. And here is where I see an ongoing problem about explaining oppressive things to those not generally oppressed by those things, or as is the current parlance: privileged people.

The answer he gave may be technically true, but it sounds like a minor inconvenience. Who doesn’t occasionally ask for help from someone to get a task done? What’s the big deal? That doesn’t seem, in the grand scheme of all the issues that Rep. Bonamici has to consider and listen to, to be that big of deal. Is a law really necessary? You start to wonder how to really explain, in the few minutes you have, to get across the severity of your problem that may come across as petty to those who don’t really understand it.

It is not that every once in a while, my partner gets frustrated by a website that doesn’t work very well — which probably happens to everyone — it is that this happens daily, several times a day, day in and day out, all day long. This is a problem of insidiousness, which minorities face in different ways and those without that experience are challenged to grasp.

Think of all the things you do on your computer or your phone. The list is probably endless. Social media, shopping, getting news and alerts, watching movies, playing music, writing papers, making spreadsheets, banking, medical management, enrolling in school, applying for jobs, filling out medical forms, tax forms, scholarship forms, reading books, checking email, the list goes on and on. And think about if, say….every two or three task you tried to do, the screen jumbled up in to a mess of unlabeled buttons or words you couldn’t understand, or even went dark. Every second or third thing you try to do on the computer is halted by a barrier wall. Meanwhile, everyone around you says it works fine for them! And maybe that sighted person who sits next to you at work was ok helping you the first time and the second time to read your indecipherable website, but by the 10th time in two days, she was so done. And furthermore, everyone around you can’t really understand why the computer doesn’t either just work or not work for you, and still expect you to do just as much work in the same amount of time as everyone else. This is the insidiousness of digital inaccessibility.

Further frustrating matters is that the problem has an easy fix. It doesn’t take any more money or time to make a website work for blind and other disabled people. Making a website or app work for screenreaders is not magical, it's totally common sense design. Sure, there is a bit of a learning curve, but there are free and inexpensive tutorials and guides everywhere. This is just asking for developers to label that button “send” instead of leaving it to say “button.” or making a table present the information in a logical way (which helps everyone) so the focus of the screen reader doesn’t shift around the page. Or using headings instead of just bolding text. Or labeling a link as what it actually will go to, instead of labeling it “click here.” Some web developers have embraced this and make fully accessible digital products that look no different to sighted users. Many have never heard of this concept because it is not taught in their computer science programs. And many more just don’t care to bother. To not require accessible digital products is like making it optional to have ramps and elevators or even steps in stores (after all, a rope ladder would be cheaper.) Or not requiring sprinkler systems in tall buildings (shrug, some people will get out.) Or not requiring all traffic signals to work properly and safely. (Most people will be fine!)

The insidiousness of this type of oppressive ablism has dire consequences that go beyond inconvenience. If an insurance form can’t be filled out or a CAPTCHA is visual, a deadline that cannot even be read may pass by and someone could lose access to medical care. In the example I gave of inaccessible medical devices, I talked about the problem of blind diabetics getting insulin pumps that are inaccessible to them and thus they cannot monitor their blood sugar without help. If sighted help is not readily available for some reason several times a day, a diabetic could actually go into a coma and die. If a person has worked years at a job and then the job changes its software client to a different brand, that blind person can show up one day and no longer be able to do their job. If a student enrolls in university, then finds out the university uses a inaccessible online interactive system, they may find they have no way to turn in papers, get professor notes or read texts. If a blind person has to make several phone calls or emails to get the same access to goods and services that everyone else can do in just a few clicks, they are robbed of the time and energy to do other, more important things. If information is not delivered accessibly, blind people can miss court dates, deadlines, and other opportunities that can change the course of their lives. If a blind person can’t vote accessibly, their constitutional rights are being violated and their voice is not heard. If a blind job applicant has to fight their way through an inaccessible job application, they have outed themselves to the employer as a blind person having blind person troubles before they even got their foot into the door. And keep in mind…not all of these may happen to every blind person, but some version of them are happening to any given individual blind person ALL THE TIME. I know my partner wasn’t even totally thinking through all of this when he said, “I’d have to find a sighted person to help me.” because we so expect this that we plan for these contingencies and even forget that others don’t have to do these things. It is baked into our lives. Sometimes even we don’t fully understand and appreciate the stress it causes and the energy it takes for us.

Web accessibility is only one aspect of the insidiousness that disabled people face on a daily basis. It is compounded by the ongoing ubiquity of hard copy print, paper forms and signage that can leave us in a complete information famine. There are many others, from being exploited for profit by gatekeeprs in the disability field, to job discrimination, to mocking, to policies that keep us intentionally poor. All of these things weave together to form a tapestry of insidious discrimination, from people grabbing us to little micro-aggressions that we have to deal with and smooth over every day to keep other people comfortable enough to deal with us. It weighs us down.

I have found it very hard to explain to people of a particular privilege this concept of insidiousness. Everyone has had a person be rude to them or treat them unfairly. Everyone has wanted to punch their computer when coming across a website that was less than user friendly. People always want examples of what minorities are talking about when we complain about oppression and discrimination. And we give examples. The knee-jerk reaction is to say it wasn’t that bad, or it had nothing to do with [minority status], or if its so bad-hire a lawyer and sue, or that it happened to them once, too. It's a lot of deflecting, and I don’t always think this is intentional.

Being a marginalized person means that it didn’t just happened to you once, it happens to you nearly every single time. The very definition of being marginalized is that you are systemically always getting the short end of the stick due to your minority status. It happens so often that you cannot tell the difference between intentional and unintentional treatment. It happens so much that you no longer even try to parse out the motivations of the other and you simple come to expect this treatment and build in a budget of time and energy to deal with it. It happens so often that you simply have to let a lot of it go or you would drive yourself insane and never get to pursue any of your dreams or goals.

It is very hard to explain to people who don’t experience this how insidious it is. It cannot be explained in a 15 minute meeting with a congressperson, or in an article or perhaps even in a feature length documentary or a book. It cannot be told in one or two stories of unfortunate incidences; it often takes first understanding whole entire systems of society and whole histories of a people. It takes countless hours and hours of listening to and believing people who live it everyday.

I am guilty of not understanding insidiousness as well. As a white person, I never thought of issues around police brutality until a black coworker of mine got killed by police for being mistaken for a relative and holding a pair of sunglasses. Even though this saddened and confused me, I still didn’t get it. My interactions with any police whatsoever had been minimal. To find out that people I knew were stopped by police on the regular and they feared for their lives each time was something I did not have to contemplate before. I had to go through years of reading stories like Trayvon Martin, Michael Brown, Philando Castile and the many others. I had to listen to and read probably several tens or maybe even a hundred books, blog posts, personal accounts from people in my life, etc. until I better understood the systemic discrimination in the police and justice system towards black Americans. And I still am learning and I still cannot call myself any kind of expert. But I do know that it takes persistent, diligent listening and study and it takes giving a shit about people that are telling you over and over again that they are being hurt and damaged not by isolated incidences, but by entire organized unfair systems and culture.

I do empathize with probably the sheer volume and vastness of people and issues that our representatives in Congress (and ALL of us) have to deal with on a daily basis. I don’t know how to better portray the constant insidiousness of our issues in 15 minute sound bites. But I will keep trying even though I feel kind of futile afterwards. But the very first step is to understand that when minorities speak of systemic ablism or racism, LGBTQ discrimination, etc., they are speaking of an insidiousness that, even if we don’t totally understand the details of it right away, we need to accept as the truth. The fact is, their years of lived experience with it are much more informed than the 5 minutes you may have spent contemplating it and deciding it lacks validity because you haven’t experienced it. It’s ridiculous to think that the thousands upon thousands of members of groups like Black Lives Matter or The National Federation of the Blind are all telling us essentially the same thing but it can’t be because you don’t understand it. We need to accept the reality and we need to make a conscious decision to work to better understand how we can change it.

I don’t want to leave any sort of impression that Rep. Bonamici was insincere in her expressions of concern and empathy for our issues. My experience today, however, made me contemplate how best advocate for vital issues that are not understood by many but affect a small population of people profoundly. And how the key to this seems to be understanding the issue of insidiousness. Understanding insidiousness in marginalized populations would seem to make it harder to exclude us and cast us aside by more fully understanding that this act of exclusion is not isolated and will be just one of a pile we already deal with on a daily basis. As I have to come up with better ways to advocate for my own inclusion as a minority, we all need to take responsibility for each choice we make when interacting with others. No interaction is stand alone or isolated. All of our interactions add or subtract to the quality of another person’s life. Are we adding to the incidious exclusion and otherness they may face everyday or is it an act of inclusion and belonging?

Photo source. Bar graph shows the following web access complaints from most to least: Inaccessible Adobe (Macromedia) Flash content.

  1. CAPTCHA (Completely Automated Public Turing test to tell Computers and Humans Apart).
  2. Links or buttons that do not make sense.
  3. Images with missing or improper descriptions (alt text).
  4. Screens or parts of screens that change unexpectedly.
  5. Complex or difficult forms.
  6. Lack of keyboard accessibility.
  7. Missing or improper headings (h1, h2, etc.).
  8. Too many links or navigation items.
  9. Complex data tables.
  10. Inaccessible or missing search functionality.
  11. Lack of “skip to main content” or “skip navigation” links.

Lisa Ferris lives with her husband, 3 boys, 2 guide dogs and 3 guinea pigs in Portland, Oregon. She is co-owner of an adaptive technology company.

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