The NFB and Me (Part 2): The Baby and The Bathwater

See Part 1 of 2 in this series: The NFB and Me (Part 1): The Blind Leading Ourselves

The fact that the Louisiana Center for the Blind in Ruston, LA is at the center of the NFB sexual abuse scandal feels like a punch in the gut. I have greatly admired the work of Pam Allen and other instructors there, as well as the affiliated Louisiana Tech programs and certification projects affiliated with it. Even though I advocated for a major overhaul of the NFB leadership structure in my last post, I want to save Structured Discovery Immersion Training programs. I do think they could also use some modification, but I don’t want them to go away. It pains me greatly to hear the abuses that occurred there. When we look at what needs to be done to improve these programs, I think it is very important to make sure we salvage the good things that have worked so well. I think we need them desperately.

Structured discovery changed my life. I went to an immersion program (in Nebraska, one of the originators of structured discovery, which I will shorten to SD for this post) and it has helped me immensely in life. Before I went there, I followed my family members everywhere, never giving much thought to where I was going. I could not have told you back then, which direction my high school was from my house or how to get there. I didn’t own my own movement. I just followed behind. I didn’t know braille and struggled with various large print solutions that weren’t really solutions and always put me at a disadvantage. I tried to always maximize my vision and pass as a sighted person, even though I was walking around with my head down and terrible posture, looking like a lost puppy.

I started my training program under sleep shades at 17. And I LOVED cane travel. LOVED it. As someone with partial vision, I was never taught cane travel before, so I had no preconceived notions. I never had to deal with a short, heavy cane. I went straight to a long, rigid cane. I never was taught tedious routes or had my gait constantly criticized or told I couldn’t do anything. So I came in fresh and young. It was the perfect time to learn how to get around on my own, without following my parents in their car.

Learning cane travel and having access to walking and busses and my own self determined locomotion was probably akin to when most teenagers get their driver’s license. I was set free. I certainly had a few hiccups in my training. I got very, very dizzy the first time I wore learning shades. I almost threw up and passed out. I was terrified to be thrown in a strawberry patch where I kept tripping over mounds of stravberry rows. I had used a cane exactly two days by then and I was clueless as to how to get around in a sort of abstract environment as that. I was nervous during my first “drop,” where they drive you around to disorient you and then drop you off and you have to get back to the center. I did fine, though.

Cane travel mostly came very easy for me. I had a huge “aha” moment when I finally learned cardinal directions. I felt victorious when I crossed my first 4-way intersection for the first time. I became a hard ass about cane travel. Although I recognized that it takes work, I felt like anyone could be as good as I was if they just tried hard enough. Cane travel, as well as braille, cooking/sewing, woodworking, and tech training, filled almost all my gaps I was suffering through in high school. I used them nonstop throughout the rest of my life. I loved that I could go to any town and with some research and a bit of social engineering (aka asking passerby for information) I could travel anywhere. And I have. I have done DC, Chicago, Vancouver, BC., Toronto, ON, Kansas City, Indianapolis, and many other cities large and small with my structured discovery skills. I felt I could do anything.

It was news to me that not all programs for the blind were like mine. As I visited blind services in different states, I saw that their students were not doing the same things we had done. Orientation and mobility training was tedious. It took weeks for students to even get outside (I was outside on the first day). They were only taught pre-approved routes. They had largely sighted instructors watching them at all times whereas I had a blind instructor who let me go on my own or problem solved with me. I was asked questions and taught to gather clues and make a mental map of where I was, whereas they were taught to just follow their sighted instructor’s very specific instructions. I was taught I could go anywhere and they were told what routes were predetermined as safe and unsafe. I only rarely felt unsafe enough to have to ask for help (like if there was a huge amount of loud construction) and they always felt unsafe and anxious.

It always felt to me like my way, the Structured Discovery way, was better. But I started noticing over the years that some people still struggled with it and even came to hate it. I noticed my then-boyfriend did not pick up structured discovery as easily as I did. I also notice that there were some that had much better travel skills than I did, whether they had structured discovery or not. But I was a convert. And I promoted it nevertheless. I have spent countless hours teaching cane travel (mostly on an informal, volunteer basis) and I have come to still highly value it, but have since learned to make modifications to it.

There are people out there who hate, hate, hate structured discovery and have had a horrible time at the NFB centers. Recently, in light of the sexual abuse controversy, the subject of consent in regards to cane travel instruction came up. The NFB SD immersion centers are known as the bootcamp of blindness training. It will be tough, but it will be the best. The consent comes in knowing that part going in. If you come here, you WILL wear learning shades (blindfolds) you WILL use a long, rigid cane that comes up to at least your chin, you WILL do drops, You will do the program. Fair enough, I always thought. No pain, no gain. As long as people are informed going in, they are making a choice and they need to follow through.

But consent is trickier and more important than that. Its like saying if a woman consents to go home with a man after a date, she also consents to sex. Consent can be revoked at any time. And although I think SD is a very good philosophy and method of training, I think there is room for modification so that more people can access its advantages and less people will feel traumatized or frustrated by it. This revolves entirely around meeting people where they are, finding their zone of proximal development (the place where you can comfortably push them past their status quo to achieve more, but not push so far as to lead them to failure) and building consent in at every step, not just the beginning.

SD can be modified to reach more people, be less traumatizing to some and be more effective about leading people to their potential. It doesn’t have to be “my way or the highway” all the time. High expectations are still possible while meeting people where they are instead of a one size fits all approach. I actually know of a lot SD advocates who are very good at this. But SD has been somehow defined as a program that only has one approach. It doesn’t have to be this way. And it is NOT this way in many programs.

My partner, who teaches mostly assistive tech, but does also teach cane travel via structured discover at times (usually in conjunction with travel tech like Blindsquare) is a master at meeting people where they are, finding their zone of proximal development and pushing them just enough. This is the modification which needs to be enhanced in some SD programs. SD does not need to be the proverbial baby thrown out with the bathwater.

There are two times in my memory where I really screwed it up when helping people with SD. Even though these are embarrassing, I am going to share them so you can see the disaster that can happen with a too rigid approach where you are missing people where they are.

The first is with my previously mentioned boyfriend. I was very young here, so ahem, keep that in mind. I was teaching him the route to my apartment informally. He had been there many times, but I felt smothered at times from him constantly holding on to me to get there. I can’t remember the exact circumstances, but I remember it was dark out (meaning I couldn’t see at all, even though I had useful vision during daytime) and he was being guided by me and didn’t seem to be paying attention to my instructions on how to figure out how many blocks to walk home. Suddenly, I remembered that I left my bag back at the place we had started from. Without telling him where he was or what I was doing, I turned around and went back to get my bag, and then walked all the way back home. …and he wasn’t there. So I went out and looked for him. He only had about 3 blocks left to go when I left him, so I figured he was nearby. But I couldn’t find him. He was a diabetic, and I was starting to wonder at what point I call the police or something for help. He was gone for another hour before returning home. He had walked 16 blocks past my house, and convinced some random dudes to give him a ride home.

You could argue that he should have known how to get to my house. You could argue that we needed to have a serious talk about how smothered I was feeling. But in the end, I left him there without his knowledge or consent and it could have been disastrous. Thankfully, this guy is pretty good about taking care of himself, even if he doesn’t do it the way I would have, and he did manage to get himself back. When we talked about what happened, he told me that it isn’t fair for me to expect the same kind fo travel skills from him when I have actually seen the surrounding area in the daytime and my mental map was so much better. I also did not consider the differences that might have occurred because of his complex health issues and his need to be safer than I could be because he has less margin of error. I could get lost for a good hour and have little to no consequences. He might actually die. He had to play it closer to the vest.

Another time…and oh, I don’t want to tell you this story, but I will…I was asked to do an activity with parents of blind children. Three of us, myself, my partner and another blind graduate of an SD center were going to do a travel demonstration. We were all very good travelers. They (not me! still want to make that point!) got the idea of taking these parents on a blind fold scavenger. hunt. I did not want to do this, because of all the studies that say that throwing people under blindfold makes them more scared to be blind. But I let myself get roped in because they said the parents were not new to blindness, they HAD to have done some of this before. So, we divided them in thirds and each took them on a route that we found super easy, just 3 city blocks on a street that had very clear and distinct traffic sounds. But, we way over estimated how simple it was and how experienced they were. My group and my partner’s group was nervous but did ok. But I was shocked at how timid and confused they were. I know this sounds dump if you are a sighted person, but as a blind person with years of travel experience, you forget where people start out. The third person was perhaps not the most sensitive to this and one of his parents ended up collapsing on the sidewalk in tears. It was awful and had the total opposite effect of what we had wanted, which was to show them how it can be done. Thankfully, my partner was able to redeem us a bit and took that one mother and her husband on another very, very simple walk the next day in a very quiet park trail. They did very well and I think this helped a lot, but it was a good lesson in what can happen if you don’t do your best to find out where people start and meet people where they are, and I would never, ever do something like that again. Its ok for someone to say, “wow, this is hard. Can we take a break or slow down?” Then they are in control, which is what you want. If you’ve got someone so broken down they are in a sobbing puddle at your feet, you are not being a hard-ass tough love instructor, you have failed.

The truth is, people come to blindness skills from so many different places. When I learned structured discover, I was almost the perfect candidate to do well with it. I was very young, I had no other cane travel experience, and I had some vision to look back on for reference. Not to mention that I was sick and tired of tagging along with my parents and wanted to bust out to freedom and this was a way to do that. In college, I met a woman who was blind since birth. She was an ok traveler but learned by route travel. She had this tactile map of campus that I thought was really cool. I totally got it and it actually helped me figure out some things about campus. But she said it meant nothing to her. She said without sight, she really didn’t understand the concept of an intersection. Another time, I was at a guide dog school that had a very lifelike and sophisticated 3D map. Again, someone who was blind since birth did not understand when I showed her the dorms where we were, which essentially felt like the building’s roof. I explained she was feeling the roof, and she said, I’ve never been on a roof! This makes no sense to me. Why are we one the roof?

This is not to say that those blind since birth cannot be taught 3D models or good travel skills. They totally can. But they aren’t going to come at it the same way I am. Some people have never even seen print letters or a compass, and think of how many times we use letters as spatial references (a U-shaped building, a T intersection). My partner had sight as a child but lost his sight when he was 11. Of all the blind people I have ever met, the ones like this, who had sight but lost it very young, are by far the best travelers out there. They have the concept of vision but had enough brain plasticity to develop awesome blindness and echolocation skills.

I had better hearing when I went through SD training. I don’t know if I would be able to succeed in a program if I were to start it today as a deafblind person. Most deafblind people are deaf first, then blind. They are missing a huge opportunity to benefit from blindness skills because these programs are not inclusive of those who are also hearing impaired or have other disabilities. As a deafblind person, my echolocation skills are almost nonexistent. I cannot use the same sound cues as my partner does. But then he doesn’t notice things like wind changes and vibrations as much as I do. There is a whole vast array of tactile cues that could be further explored and taught using SD that would be more inclusive to Deafblind people and enhance learning for blind folks. Some of our older clients have significant trouble with memory. This means they need a different approach than others. Folks with other disabilities can also benefit from SD travel skills, even if they don’t use public transit and depend on ride share or paratransit. SD travel is more about “owning your shit” and being self determined. It doesn’t have to be about doing every single step by yourself in the same way as every other blind person.

There is also the sort of emotional connotations of vision loss that some people seem to struggle with more than others. Instead of just being all “tough love bootcamp” about this and disregarding people’s real fear of blindfolds, we need to address it in a way that creates confidence and success. Otherwise, it just leads to failure. The first time I wore blindfolds for training, I got dizzy and nausuous. I was making a pizza in sort of a trial before I went to the center full-time. I remember having to fall to the floor to not pass out. They let me take my sleep shades off, and within minutes I was better. This was my main fear about going full time to the center. I thought I would be constantly dizzy. But although I had to rest and take breaks the first day or so, I quickly got over being dizzy under blindfolds. After that, I had no big emotional hangups about being under blindfold. But if I were not allowed to ease into blindfolds the first couple of times, I can see how I would have not done well. It was a hellish feeling while it lasted.

I saw other people being deathly afraid of the blindfold. You can say that’s tough, this is our program, or you can work with them and see if you can get them over it, or even teach in another way without blindfolds. It is easy to just turn off a monitor, or put a towel over someone’s hands when reading braille. Travel is a bit trickier, but you could try short bursts and gradually build up your time. The goal here should be success of the individual student, not compliance with a rigid program. One size fits all will always fail some.

It is possible to have high expectations and still meet people where they are. It is possible to take people as far as they can go with SD, even if that doesn’t mean you can drop them in a strange city and they can get around. Even if that means they always use paratransit. SD is about the possibilities. It is about not holding people back with external mythologies about what some sighted person thinks a blind person can do. SD is about growth, however that growth looks. And SD is about self determination; about owning who you are and how you want to move in the world. When someone gains this power through SD, it is a success.

Structured Discovery has a lot going for it. One of the strengths of it is its instructors, many of whom are blind and have real lived experience to share. They are also “of” the community, which helps build consensus, confidence and achievement. In my SD program, I was told that the instructors were hired because they had the skills and the director purposefully avoided folks who had gone to professional blindness certification programs, where graduates were heavy on procedurals and low expectations but low on actual competencies to teach skills. I hear this criticism that NFB SD instructors have no training and are not certified. I am here to tell you that traditional certification does not guarantee quality programs. You do not want to lose your highly skilled and competent blind role models in these programs.

However, sometimes when you are of the community you teach, it gets trickier to set boundaries. It is not fair to completely take away the blind community from blind instructors. However, more guidance around setting appropriate boundaries could help many blind professionals who walk this tricky tightrope between detached professional and community comrade. Too much detached professionalism creates an us vs. them dynamic that lowers the quality of the program. But some formality about boundaries needs to be put in place.

I really want the SD immersion centers to make it through this current disaster and come out better on the other side. I think that includes improving how we approach students coming from different starting points and perspectives, as well as appreciating the blind talent that is out there while helping them find the balance between impartial professionalism and camaraderie. This is a great opportunity to recreate a program that is more inclusive, safer, and better for all who need it. SD is a baby we need to protect, and not throw out with the bathwater.

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.

Homeschooling

I’m attempting to wake up the homeschooling blog, which has been almost dormant. I have kept a pretty basic yearly summary of what the kids have done each year. There are some challenges there, as well as some places I could go with it. In this homeschool blog post, I try to round up the ideas floating in my head about it.

On Being the Only Minority in the Family

This article I wrote for Rooted in Rights was a tough one for me. I ended up rewriting it 3 times. The first version I turned in to editor Emily Ladau was over 3000 words long and was a meandering thing full of caveats. I did not want to put my mother in a bad light, and I felt like I could not tell my personal story (a requirement of the piece) without her. I knew I needed to slim it way down. Parts I cut out were:

  • That I grew  up in the 70s and 80s, and even though there was a lot happening in disability civil rights in places like Berkeley and Denver, none of that made it to suburban Iowa or Nebraska.
  • That the word ableism wasn’t even really a thing yet.
  • That there was no internet and significantly less local organizing. Families back then really only had the medical and educational professionals to tell them what to do.
  • I went to kindergarten in 1975, the year PL 94-142 was passed (now known as the Individuals with Disabilities Education Act). Having teachers of the visually impaired and blind kids with IEPs in regular schools was brand new.
  • “Maximizing vision” was the best practices at the time. This has somewhat changed since then.

What I also wanted to say, is that although in my mother’s time, the conditions were as above, making it challenging for parents to recognize that they maybe needed to get rid of oppressive attitudes about disability (or even understand that they had oppressive attitudes about disability), these excuses are not nearly as viable today.

Today, when a parent has a disabled child, it is much easier to find accurate information, learn about disability as a civil rights issue, and connect with adults with disabilities to find role models. Although I recognize that inherent ableism will not go away overnight and there is a learning curve to understanding and accepting a disabled child for who they are, there is really no excuse for parents to still hold the life-long poor attitudes about their disabled children that they did in the past. Self-Advocates have worked hard to reach out and be welcoming to parents and families. Information is readily available. Its not perfect, but support is out there.

However, I still see parents hurting their kids with their ableist and unaccepting attitudes. I still see parents who treat adults with their child’s disability with loathing and disdain and I still see parents forcing their kids to “PASS” as not disabled (or less disabled) using  methods that are unworkable at best and cruel and abusive at worst.

Instead of using the internet as a tool to reach out and learn from the disabled community, I see parents using social media as a way to martyr themselves using their “difficult” special needs child as a prop for how wonderful they are and how worthy of praise for putting up with such a kid. They display their child to reach these ends without any respect for the child’s privacy and understanding or empathy for their child’s point of view.

Every once in a while, I am asked to meet with a parent support group. I tell them, I DO NOT DO support groups. I am not a counselor, I do not care to sit and listen to parents whine and cry about their hard life with their disabled child. What I will facilitate is Information Exchange Groups. I can help with information about learning alternative techniques for sensory impairments. I can help with learning to take control of an IEP meeting and know your child’s rights. I can help you learn to advocate for reasonable accommodations. I can update you on tools and technology are available, etc. Why should I listen to you whine in fear about how your child may never go to college or live independently or have a family when I know that is a wrong assumption and I can show you hundreds of examples of people with disabilities who are doing those things successfully and we can talk about how they do them?

For many families, getting this information is exactly what they need to move beyond the fear (and need for whiny support groups) and get past their ableist attitudes. If those families keep working on it, they will be fine. But then, there are the others. Families who really DO NOT WANT TO KNOW the solutions to living in the world as a disabled person. Who don’t want to meet and accept successful adults with disabilities and who don’t want to be told that whining and martyring yourself on the cross of your child is damaging. When this happens, my goal changes. I focus on the kid. I try to give that kid (sometimes adult kids) every opportunity to obtain the skills and resources they need. Because when you find yourself in a family like that, you need to RUN AWAY as fast as you possibly can.

Luckily, there is a community of disabled adults who will be there to support you.