The NFB and Me (Part 1): The Blind Leading Ourselves

See also part 2: The NFB and Me: The Baby and The Bath Water

In light of the #marchingtogether scandal involving sexual abuse in the National Federation of the Blind, the largest self advocacy group of blind individuals in the United States, I have been examining my relationship with the group. And…well…I’m just really disappointed, but its complicated.

In many ways, the sexual abuse scandal did not surprise me because it is by and large a reflection of what has been going on parallel in the rest of society with #metoo and #timesup. There has finally been a long needed reckoning in regards to how men treat women and issues around consent. I’m an Old, and in my youth, I did suffer some relatively minor abuse within or closely adjacent to the NFB. There was the fellow student who grabbed me from behind and my training center apartments, making cracks about my breasts, grabbing at them and not letting me go. A staff member was right there watching. And it was not until I got an elbow free and started jabbing him in the face with it that the staff member was finally annoyed enough at the situation to say “cut it out” so the student would release me. There was the whispers among the older women to us younger women at NFB events about who to avoid and who was “gropey.” Those who did not heed this advice might find themselves dodging a man whose hands wondered down your backside, between your legs, or up your chest, “accidentally” of course, when you just wanted a piece of technology demonstrated in the exhibit hall. There was an old smarmy man who was a state politician who was constantly drunk and rubbing up against us while he propositioned us to go back to his hotel room. But the state leadership had the “boys will be boys” attitude about this. And, we were told, because he was a prominent politician, we were behooved to protect his reputation. It is rare to be a blind politician and it was important to protect those who had achieved such positions.

But these attitudes of 2-3 decades ago were no different than the attitudes of all of society about sexual harassment, abuse and assault. It should be unsurprising that blind men, just like their sighted counterparts, and dealing with a long overdue reckoning. The last few years have been an era where woman have learned to collectively put our foot down and not take it anymore. We have finally been able to put men on alert. This type of behavior will now have consequences: you will be held accountable.

Certain large organizations, from the Catholic Church to the Boy Scouts to USA gymnastics and now the NFB, have seemed to be plagued by this type of abuse, though. It is important to look at what makes certain organizations a breeding ground for such things. I don’t think the general membership of the NFB is any more or less filled with sexual abusers than the general populations, but yet, when the accusations came out, I can’t say I was surprised. There was something that was bugging me about the NFB long before this problem came to light, and I am still trying to define it.

I was first introduced to the NFB in high school via my state Vocational Rehabilitation Services. Nebraska Commission for the Blind was (and still is) a state that has embraced the NFB philosophy of high expectations and standards for blindness rehabilitation. A training philosophy called “Structured Discovery” originated in Nebraska and Iowa. Structured Discovery changed my life for the better. It was a breath of fresh air, and has had a substantial impact on my success in college and graduate studies, my career and in my personal life and general mental outlook in regards to blindness. (See more about the NFB and Structured Discovery in Part 2 of this series.)

I was involved in the NFB in the late 80s and early 90s as a graduate of the Nebraska Structured Discovery program and as a college student. I went to conventions, I was involved in the Student Division at the University of Kansas. I went to the Washington Seminars and spoke to members of Congress on behalf of the NFB. I did public speaking gigs where I touted their philosophy. I argued with my professors and sited works from NFB leaders. I met and was awed with successful NFB leaders. I provided countless hours of mentorship to younger college students. I volunteered many hours to teaching braille, cane travel and tech to newly blinded folks. I saw the importance of blind collective action and self advocacy. I met and still know many great people in the NFB.

When I graduated from my master’s program, I moved to Oregon and got a job helping to organize advocacy for people with intellectual disabilities. I went to one or two local NFB meetings, but they were not really very active or organized, so I kind of faded out and stopped going. I was also working with a man with quadriplegia whose health and socioeconomic issues put him at risk for being put in a nursing home. My focus became broader across disabilities. I became more interested in working with organizations such as ADAPT and Self Advocates Becoming Empowered and the American Association of the Deafblind. Its not really that I consciously quit the NFB, I just didn’t have time to focus on it as much as I did before. Working on advocacy around “just blindness” seemed limiting when so much more was at stake around the issues of independent living and community supports and autonomy.

When my husband and business partner, Nik Petersson, and I started an assistive tech company that focused primarily on blindness skills training, we wanted our office to be a place where blind people could find community. A first step to that seemed to be getting the NFB to form a new local chapter that would be more active and centralized to our metro area. We offered up our office space to this new chapter, as well as the local ACB chapter. I have never really clicked with the ACB as I have with the NFB, so I started trying to become more involved in the NFB again.

But as society had changed in those 20 years, so had I. I now looked at disability issues through a much broader lens. I was also deafblind now and had Chronic Kidney Disease. “Just blind” didn’t describe me anymore. And through my work with advocates with intellectual disabilities, I now had a much keener understanding of the nuances of supporting people while they used their own voice. Self determination was a top priority for me in regards to the disability community. Even if a disabled person made what I thought was a mistake, I was determined that they had a right to make that mistake and learn from it without being dictated to. I started to see serious problems with the NFB’s top down structure that I had not been able to see when I was younger.

Some of my problems were purely logistical. As a Deafblind person, many programs and activities were not accessible to me. The monthly presidential address was audio only. The meetings were hard to follow. When I attended the 2019 Convention, I very much enjoyed the Deafblind division’s meeting, but I felt excluded everywhere else. I learned that the DB division had been working for years to get interpreters, live captions, transcripts and other accommodations that would allow DB folks to participate. Were DB folks even a part of the NFB? It sure didn’t feel like it. The reputation of the NFB among the Deafblind was so bad that when I was asked to start a DB division, I was scoffed at by most DB people. “What are we going to do, just sit there and be excluded? (The NFB has made some improvement about providing transcripts and live captioning in the last couple of years.)

Furthermore, the insular, top-down nature of the NFB didn’t sit well with me anymore. I had noticed it in my 20s. How there wasn’t any room for dissent. How no one really ran against anyone in leadership positions (or if there was, it was hidden from the rest of us by the nomination committee process.) How the elections seemed pro forma and performative. But several people explained to me that this was necessary to create a united front and to protect our collective organization. Unlike USA Gymnastics or the Catholic Church, many people come in to the NFB in various ways damaged and traumatized. To be blind is to be marginalized, oppressed, disregarded, looked down upon, and failed by family, school and society. Many members come in lacking educational opportunities, having suffered long term emotional abuse and ridicule, and have been stripped of their own autonomy, and having internalized the ablist messages about their own self worth and abilities that can be found everywhere in society about blind people. It was necessary to have a solid leadership and a top down structure because their were so many negative forces in the mainstream society to fight and protect people against. If it was truly a bottom up, grassroots organization, they wouldn’t have gotten nearly so much accomplished. The leadership knew what was best for us and we needed to allow them to lead us.

The NFB is not an organization FOR the blind, it is the blind leading themselves. Often we correct people when they erroneously call it the National Federation FOR the Blind. It is OF the blind, we are taught to say. And this is very important. It is in response to the myriad of historical and present day philanthropies and social service organizations run by sighted, non disabled people who did not so much serve us and our best interests, but served themselves via exploiting our vulnerabilities. These organizations spoke for us without asking, had low expectations and acted as gatekeepers to our opportunities and civil rights, often excluding us and creating artificial barriers for us even more than general society did.

As a person who majored in special education and has worked in the disability field, I know how important self advocacy groups are. The training that is offered in special education and rehabilitation programs throughout the country is abysmal. Graduates come out not knowing braille, adaptive technology, orientation and mobility, or other vital blindness skills at any level even approaching basic competencies. They are taught ablist, medical model philosophies and low expectations. These professions often attract people who want to be recognized as helpful heroes to unfortunates more than they really want to fight for equality and see us as equal partners. Self Advocacy groups, including the NFB, are vital to the promotion of equal rights and access to society. The NFB is not the Catholic Church nor USA Gymnastics who are respected and rule their domain, the NFB is the underdog that fights for scraps of power and influence. As each individual blind person is marginalized by ablism, make no mistake that the NFB is marginalized on an institutional level. And its membership is filled with a higher level of members who lack education, come from experiences of abuse, and have internalized low expectations and ablism. It is a tough gig.

Which is why I think they have created such a top heavy organization. When I first returned to the NFB after my long hiatus, I attended a state leadership conference. The affiliate president spent the first morning telling us that the NFB was in fact leadership led, the power comes from the top and not the membership, and that the main rule of the NFB, not unlike Fight Club, is that we do not talk bad about the NFB outside of the NFB. She went on to tell the history of each of its presidents in mythical terms. There are not too many presidents for an organization that is now 81 years old. There was Jacobus tenBrooke, Kenneth Jernigan, Mark Mauer, and Mark Riccobono. The couple of other very short term presidents were not mentioned. One president was the “loving” president. Another was the “tech” president. We were being dictated to how we should think about them. I had met Jernigan. He jokingly bopped me on the head with his cane when I questioned an issue involving SSDI that he disagreed with. That was the end of that discussion. Though I do have respect for some of his accomplishments, “loving” is not a word I would have used to describe him. But this was the history we were to believe without question. At the lowly, local level, we were worker bees. Our job was to increase membership and raise funds. The Leadership Conference felt more like a Dutiful Follower Conference. I was turned off.

I understand to a point the importance of creating a united front for the organization. This is Advocacy 101. In-fighting never allows you to meet your goals. On a more individual level, I know that I personally do not talk smack about any blind person. There are blind people I don’t like and who I don’t agree with, but even those I do protect as much as I can. This is just part of being a marginalized community. It is hard enough out there. If I say something to a sighted person about a blind person I disagree with, I could inadvertently contribute to a chain of events that cause them to lose their job, educational opportunity, even children. The stakes are high, and like any community that experiences oppression, we look out for one another, we protect each other. It is one of our strengths.

However, there is a line I draw as far as this goes. I would not stick up for someone driving a car while blind (it occurs often), sexually harassing or abusing someone, or generally committing any type of violent crime. And this is where the NFB, in protecting its own…sort of slid off the cracker. I knew that gropey men existed in the NFB 20 years ago. I knew that there were probably still young people who needed guidance (due to never receiving it in their own educational experience) to understand social issues around consent and engaging in intimate activity. I had no idea that Fred Schoeder, a man I admired and met on several occasions, had decades of complaints against him for sexual misconduct. I had no idea there were incidences of training center instructors assaulting minors in their tutelage. These events are beyond the pale, and it is hard to understand how other professionals I admire could let this type of thing happen. I can only surmise that they took the task of protecting themselves and the organization way too far. Accountability needs to happen.

Although the NFB is attempting to address the problem with several steps, such as partnering with RAINN to offer training and beefing up their code of conduct and complaint process, I am afraid that the root of the problem is not being addressed. And this relates to this top-down, opaque, insular, heavy-handed leadership issue. Elections and voting in the NFB have always been difficult for me to watch. They remind me of reading about elections in dictatorships. Sure, people vote, but it is not a democracy. There is no room for dissent. When you have 4 leaders over an 80 year history, each one groomed for the position by the outgoing president who is leaving because he decided to retire, you don’t have elected leaders–you have dynasties. The elections, from local chapters to national elections, have never been particularly private. Especially at the national level, there are never challengers. People who oppose certain candidates or resolutions are often retaliated against, and often loyalty is rewarded above integrity. Its not so much that the leaders are terrible people, they are often quite good at what they do and likable. But the absolute hold they have over all matters of blindness advocacy turns other promising would be leaders away and silences the larger membership. This type of atmosphere leads to a breeding ground for these types of sexual abuse scandals to fester. This abuse scandal did not happen because the NFB has an especially large number of creepy sexual abusers and pedophiles in their midst, or even that the leadership isn’t rightfully horrified by this abuse. It happened because the environment of the NFB is not a member-led, transparent open democracy. It is too tightly controlled by the top with too little trust and respect for the rank and file.

Which is ironic, because the NFB was formed because the blind were tired of service providers and the public thinking we were inferior and thus didn’t trust us to know what was best for ourselves. But the leadership of the NFB has acted with that exact same distrust and dismissal of us. Perhaps, a real member led organization, where we elect leaders democratically and really do lead ourselves, we will make a few mistakes and we will move at a slower pace, and we will take longer to get to a consensus. But even so, in the long run we will be stronger and even more self determined. And I doubt we would make this type of huge mistake that the leadership made here.

Along with the changes that are being made in regards to sexual abuse specifically, we need to look at wider reaching improvements. We need real elections, real leadership training (not follower training) we need transparency and accountability, we need multiple people to run for office, we need term limits. And as much as I like the current leadership–they have a lot to offer and they are not evil people–they need to hold themselves accountable by stepping down and letting the membership build a better leadership from the ground up. We need to really be the blind leading ourselves.

Please also read Part 2 of this 2 part series, where I discuss structured discovery and consent.