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.