According to Wikipedia (http://en.wikipedia.org/wiki/Nothing_About_Us_Without_Us) the term "nothing about us without us", an ancient term dating back to the Roman era, is "used to communicate the idea that no policy should be decided by any representative without the full and direct participation of members the group(s) affected by that policy." The same tells us that this phrase has been used by people involved in the movement for civil rights for people with disabilities for many years.
Today, May 1, has been declared, "Blog Against Disablism Day" for 2013. For this event, I wrote a piece that will appear on Skepchicks.com that provides a number of examples of "disablism" I face and is illustrated using personal anecdote. It is written for an audience with no background in disability or accessibility and is meant as an introduction to the "invisible" discrimination we face. Skepchicks readers are, like me, interested in scientific skepticism, social skepticism, humanism, atheism, feminism and all sorts of issues unrelated to disability. This blog, here on hofstader.com, is read mostly by people in the field of access technology, people seriously involved in the movement for rights of people with disabilities and random weirdoes who think I write interesting things. This entry, therefore, will likely use more jargon and "insider" vocabulary as I'm writing rapidly and haven't the time to edit it properly for a wider audience. If there's anything herein that you don't understand, please send me a note via the contact form on this site and I'll happily define anything you like. I'm in the process of moving this blog from Dreamhost to another ISP and changing it from Drupal to Wordpress so I don't want to spend any time fixing up this page, hence, if you want to make a comment, please send it via the contact form and I'll post it for you without edits - feel free to call me a dick on my own blog and I'll put it online for you.
People who know me and those who follow me on Twitter (@gonz_blinko) know that I think the 21st Century Communications and Video Accessibility Act of 2010 (CVAA) is the most important piece of civil rights legislation for people with disabilities who use technology ever. This legislation requires that all communications equipment, web sites, televisions, most mobile software and lots of other good stuff be made accessible or face a fine of up to $100,000 per day until the technology has been remediated for accessibility. This is the first legislation in the US with real "teeth" in its enforcement clauses. The FCC is charged with prosecuting the offenses and, yesterday, President Obama appointed a new director of FCC, a hardcore industry lobbyist, an industry that has fought the rights of people with disabilities every step of the way. Clearly, the president's choice to lead this important agency was made without consent of people with disabilities so Obama is doing very important things "about us," well, "without us."
The National Federation of the Blind (NFB) claims to represent the community of people with vision impairment. While being a highly political advocacy group, they chose to ignore CVAA and filed absolutely no commentary on the legislation, how it should be enforced or how it should be applied to the population of people with vision impairment. Meanwhile, Pratik Patel (@ppatel on Twitter) spent most of a year, on behalf of ACB without pay, writing up hundreds of pages of comments. Why is that NFB, with its vast resources refuses to participate in the crafting and rule making processes on such an important law for this population completely boggles the mind.
Recently, the NFB has filed to create a class of blind people under its umbrella stating that they represent blind people. I contend that, with 50,000 members out of 1.75 million PWVI in the nation, the National Federation of the Blind represents a small minority of the community and that it should not have its class certified as, clearly, they do not represent me or any other of the 1.7 million blind non-members of NFB.
Why also NFB chooses to file a lawsuit against H&R Block (they have a great complaint, this company clearly discriminates against our community) when CVAA will be in effect and prosecuted in October 2013, also vegas a huge question, why resort to litigation, usually a tool of last resort, when we'll have a standard set of regulations on the books with a formal complaint and prosecution process in a few months? I will submit, without evidence, that NFB is fighting to be relevant in a world where blind people don't see their leadership as useful. In fact, I contend that NFB, by staying out of CVAA process, is doing things "about us without us."
The community of people with vision impairment and our friends with other disabilities need leadership but those who claim to be the leaders today are woefully out of touch with modern technology, life in a real workplace, issues involving technology (let's give Mark Maurer and Curtis Chong, of NFB and the head of their computer subgroup a technology competency test and we'll see that they understand tremendously less than the average blind high school student) and other issues involving the younger, hip blinks, defies and crips.
For us to say, "nothing about us without us," we need a leadership who intimately grasps the issues, people who live with the problems every waking hour of every day and not people like Maurer and Chong who enjoy the luxuries provided by the NFB's resources. We need litigants like Rosa Parks, people who will force precedent rather than organizations that happily accept large cash settlements without accessibility progress from their actions. We gain nothing when NFB gets a lot of money; we only benefit when accessibility is a requirement of such a settlement, something NFB did not include in its multi-million dollar settlement against Target or in their lawsuits against Amazon or AOL. Recently, however, NFB did show a change in policy as they did include an accessibility requirement in the lawsuit settlement in which they participated against Florida State University and should be commended for doing so.
It is my opinion that the leadership needs to change as fast as possible. We need new faces, people who are technically competent, people who understand the challenges faced in the workplace, universities and schools, people who understand and support the legislation that effects us and, most importantly, people who eschew counterproductive sectarianism and who will work effectively with other blindness groups (NFB and ACB have spent profoundly too much time and energy fighting each other for more than 50 years), with groups representing people with disabilities unrelated to vision (something that will require a cultural change in advocacy groups from all sorts of disabilities who are used to working only on their narrow issues) and who are willing to identify and work with feminists, racial and ethnic minorities and all others who face human rights challenges anywhere in the world. If we don't join into a coalition with like minded groups who share our overall goals of civil and human rights for all, we will continue to stand divided and minimize our power and efficacy.
For "nothing about us without us" to be a useful goal, we need leadership that promotes inclusion. I'm skeptical of how effective CVAA will be given the president's new FCC appointment. I didn't however, see anything from NFB, ACB or any other group claiming to represent the community of people with disabilities on this matter. Everyone who cared knew the president was about to hire a new person to head FCC but where were our leaders on the matter? If NFB represents the class of people who self-identify as having a vision impairment, why don't I notice their representation in issues about which I and most of my gang of technological intellectuals find important?
So, let's try to work outside of the established groups claiming to represent us and form a confederate collation to represent the class of all people with disabilities that works with other groups who face discrimination. Let's find new leaders and support them in efforts that the established advocacy groups ignore. Let's take back control of the politics of our community. If it's about us, it should never be without us and until a new leadership steps up, we'll never be more than random shouts in a storm. If we want to end disablism, we need to be willing to do the work and take the slaps that will come.