Everyone has a secret stash of something. Oh come on, don’t pretend you don’t know what I’m talking about. We all do it. Some stash chocolate, shoes, paper clips, or money. In my case, it happens to be accessible information.
Unfortunately, there is nothing secret about my not so secret stash of chocolate. I am pretty open about my habit. I’ve been known to put the call out on social media requesting a re-stock of said secret chocolate stash. And as for shoes, I’ve declared “shoe lover” as a part of my LinkedIn headline for quite a while. Therefore, nothing secret about that either. Although, paper clips have never been of interest to me. Sure, there had been the minor obsession with stationery in my younger years, but that wasn’t practical. It’s now filed in the things I would do if I were sighted basket, along with driving, sky diving, and catching a tennis ball.
When it comes to accessible information, I can’t help myself. I simply have to have it. If information is in an accessible form, and relates to an idea, project, or qualification past, present or future, I will tuck it away for later. Now I really should clarify. By relate, of course I mean vaguely connect in a six degrees of separation kind of way. I just never know if I might need it one day.
This is because in this age of electronic information, innovation, and online interaction, so little of it is accessible. I can’t help but operate from a place of scarcity, fear, and lack. This in turn can often inadvertently seep into other areas of my life. It can cause me to think, feel, and act in ways that are not always healthy, helpful, or honest.
Should I Speak Out?
The lack of accessible information for people who are blind or have low vision is such that I’m forced to scrimp and scrounge and save the crumbs I’m offered from the world’s knowledge base. I’m told to be grateful for what is available while conveniently ignoring what is not in comparison to my peers. However, I am often labelled as a whinger if I dare to call the discrepancy out in any meaningful way. This is regardless of how well articulated my position or proposal is put forth. I am treated as an inconvenience, a troublemaker, a dreamer, or a drama queen. I am often met with a list of excuses, mythologies, stereotypes, and ignorance as to why accessibility to information is not yet truly possible.
Depending on the source, the estimation regarding accessible information falls anywhere between 5% and 15%. However, if we were to go out on a limb, and it is a very long limb, and suggest it is as high as 25%, that is still 75% of the world’s information that is not accessible to me or millions of others. Although how it is quantified I do not claim to understand. Either way, the percentage of accessible information is unacceptably low. More needs to be done to decrease the digital divide.
The Power Of Perception
It is not only from a professional perspective that I worry about all that it means regarding the frightening lack of accessible information on a worldwide scale. In fact, it is almost too much for me to wrap my brain around. Therefore, I try to avoid it. Because if I think about it too much, or for too long, I can easily become overwhelmed, defeated, and sink into a depression regarding the situation. And let us be honest, that state of being doesn’t solve anything. However, at the same time, there are only so many face to face conversations, or emails a girl can write. There’s only so many rejections, resistances, and negative responses a girl can handle before coming undone, and wanting to give up.
From a personal viewpoint, I find it difficult to comment. It is almost as though I have no right to have an opinion. Because in spite of myself I have inadvertently bought and absorbed the lie of personal invalidation that accompanies the systematic denial to information in one form or another on almost a daily basis. I have never known the natural ease and effortlessness that comes with access to information. All I have is a lifetime of wishing, wanting, willing, and working for things to be different.
In A Perfect World
I wonder what it would mean to have access to the entire breath, depth, and width of the world’s information the way that others potentially have. Even though it would be impossible to access, interact with, read, learn, or write about, it would be nice to have the choice. How would that ripple through my life? What would I do differently? Who would I be? What new things would interest me? Some things I’m interested in are just too hard, or too inaccessible. It isn’t worth the effort, so I choose to be interested in other things instead. Would that change? Would my curiosity and appreciation of information be the same? How would it increase my sense of freedom, empowerment, and opportunity? Would I be more successful, wealthier, happier, more educated, or more accepted?
Easy For Some
Admittedly, I can always cobble something together that appears well researched, well resourced, reasonably well written, and relative to the task at hand. At least I hope it comes across as such. However, I cannot begin to imagine what else I am missing. All I know is that it is missing. And the feelings of inadequacy, incompetency and ignorance that accompany my presentations, papers, posts, and comparative limited potential are sometimes soul destroying. It leaves me humiliated, ashamed, and undermined. Is it any wonder I feel like a fraud regardless of my knowledge, skills, accomplishments, and the tangible evidence that suggests otherwise?
Knowing I could have done more, or it could be better, and it would be easier, is always silently and hopefully unseen in the background of anything I write or ramble about. I’m the only one who is aware of what I specifically come across during my research that I cannot access. I’m left to make do with the dregs of what I can access to build the base of my pieces. I am always left with a feeling of vulnerability. Maybe I have not gotten it quite right due to the lack of access to information that would allow me to double check or cross-reference my facts, findings, or fiction.
The Elephant In The Room
Sure, we can talk about the nobility of overcoming adversity. We can languish in the self-congratulatory echo chamber of how far we have progressed regarding access to information and opportunity for people with disabilities. We can pretend as a society we are doing enough, and are indeed working to make things more equitable. However, are we really? Or has the subversion of ableism and passive aggressiveness of discrimination merely become so normal that no one can see the elephant in the room? Has it been there so long that its obviousness has ingratiated itself into the cultural landscape? Is it now considered as essential to our survival as the sun and the moon?
The Thin Edge Of The Wedge
What frustrates me most? Not the fifteen somewhat disorganised USB’s floating aimlessly around my desk drawer. Nor the mishmash of 360 favourites I have bookmarked in my internet browser settings. It’s not the 47 electronic library loans I have on hold. It’s certainly not the pile of Shakespeare plays on CD bouncing unused and antiquated around the house because they are accessible and just in case nothing else is. There is more to it than that. So much more.
What frustrates me is the limited and rather crappy selection of print/braille books on offer for me to educate and explore with my child. The difference between Audible’s geographic locations regarding title offerings. The unwillingness of television and film to provide audio-describe for their programming as a matter of course. The deficient education and understanding of website and app developers regarding the benefits of inclusive design. The complex software settings and unnecessary hoops document remediators need to jump through in order to ensure information is accessible across platforms and mediums. The lack of transcripts and/or captioning of video and photographic content. The alarmingly high instance of scanned documents in academic databases. And the all to common practice of businesses shaming me following a request for accessible information.
What frustrates me most of all is calling out my disability as the problem, rather than the flawed systems, processes, policies, programs, and plans in place that create the barriers in the first place.