My little twinnies, the ones that made me a mother, are now 18 years old. Like many parents, I can hardly believe how fast it went. But the fact that 18 years has passed is very significant to me.

When I think about “18 years,” I think back upon the worst moment I had of being a mom. It was when my twins were only about 3 weeks old. They had been born via C-Section about 5 weeks premature. I was recovering from this plus an unexpected eye surgery a couple of weeks prior to their birth. I could see a bit of light out of my left eye, but my better right eye was blind now. I have always had low vision, but I was adjusting to a a new level of blindness. My children’s father, who is a C6-7 quadriplegic, was having difficulty lifting the babies out of their crib. It was a bit of a mental thing. He could do it with a special swaddling blanket we had gotten with loops on the corners. Or at least he had done it before they were born with dolls and flour sacks. But with live babies, he lost his nerve. So, instead of taking shifts where I could sleep, he woke me up all the time whenever they needed to be held or fed.

I was going on…I really can’t calculate how many days of extremely little sleep. My premature infants were having difficulty suckling and were a challenge to feed. And as I sat on the couch, I felt absolutely abandoned. Because for the most part, I was. At that moment, I felt like I could not go on for 18 years this alone and this tired, with this much hatred coming my way. The concept of “18 years” of parenting ahead of me was overwhelming. For pretty much the only time in my life, I thought of how I could kill myself without leaving the babies unattended or doing it with someone else in the house who could take care of them. At that time, they really couldn’t go more than two hours without care and not have grave risks to their health. The logistics of that problem despaired me even more.

I knew my decision to have children as a single disabled mom would raise eyebrows and I knew it wasn’t a decision everyone would make. But I had an education, good skills, and a decent full-time job at a university. I told people I was planning to have kids. I did not hide it. People just sort of went along with what I said without much comment. But looking back, I guess people did not believe me? Because the reactions I got when I told some folks found out I was pregnant were beyond any expectation of negativity. A family member walked out of the room and didn’t come back. Another one, whom I had told in what was supposed to be a celebratory dinner, left the restaurant and chose to walk home. People wrote emails about me that got back to me that talked about how awful I was, and I was shown a video clip of another family member (who wouldn’t decide to come meet my kids for over 2 years) where they talked about how I was going to fail behind my back. Even strangers on the street said vile things to me when I began to show as pregnant. People who walk around with white canes are not supposed to also be pregnant apparently.

Not to seem over confident, but I had never had any doubts about my ability to be a disabled parent. NONE. I had been taking care of other people’s children for forever. I grew up taking care of kids. I had two degrees in education and spent countless hours in classrooms taking care of kids, some of them very medically fragile. To pay for expenses during college, I had started an ad hoc business providing care for kids with significant disabilities. I worked in classrooms where kids were labeled “behavior disordered” and I took care of kids in their homes who used oxygen and life support. I worked for two years in the Child Life department at a children’s hospital. I worked both in the oncology unit and the PICU. I was a certified nursing assistant with CPR certification. I knew how to take care of people with a variety of needs using alternatives to vision when I needed them. I even counseled other blind parents on ways to adapt to tasks as a blind parent.

All the things people worry about with blind parents did not phase me at all. How to feed a child when you can’t see their mouths? I had already done this many times. How to know if your child has diaper rash? Easy, you can tell by the way their skin feels and how they react when you touch it. How to find them on the playground? Bells on their shoes and also getting up on the play structures with them. Getting them around with a white cane or guide dog? No problem, with the right stroller, pulling them behind you works just fine. Knowing when they are up to something? Well, this develops over time, but its all about communication, knowing when the silence is a little too silent. Context and a bit of a sixth sense. Did my kids ever sneak around me and do things without my knowledge? I’m sure they did, but not any more than anyone else’s kid does. Parenting while blind was not all that hard and not something I worried about.

But I did not count on how the ablism I experienced would be passed on to my kids.

About 2 weeks before the twins were born, right after my eye surgery I was on bedrest. Some family of the kids’ father called me up and offered to bring me dinner. How nice of them, I thought. I did not feel like eating, nor did I feel like getting up and socializing. But since they made the effort, I forced myself to. When they got there, my partner and I were ambushed. They were just yelling at us. “How are you going to get through the first 30 days?” They demanded over and over again. I suggested that I could get several people together to take shifts or days to spend a few hours helping me out, just until my C section healed and I was back on my feet in a routine. “No one wants to help you,” they said. “Everyone expects these babies to end up on their doorstep when you can’t take care of them.” I was blindsided. Ok, I said. No one has to help us. Fine. Don’t worry, no babies are going to be left on doorsteps. It was so hateful and out of left field. What had I ever done to deserve this? In the ten years I had known them, they had helped me move twice, and done some other stuff for my partner, much of it was unsolicited by us. It seemed like just, family stuff. And if it were not to them, I would have appreciated knowing that they felt this way a little bit before I was due to give birth. But I was never in the position of being taken care of on a daily basis by anyone.

Even in the hospital, some of the nurses were not on my side. A CNA came in to tell me in the middle of the night that the nurses had called CPS and said we couldn’t feed our children. Since my kids were premature, they had some eating issues. This was very common. I was both pumping milk, and breastfeeding and bottle feeding two infants with no sucking reflex the entire time I was in the hospital. But their weight was dropping. Nearly every other mother I have ever talked to who has been in this situation said that their kids went on to spend time in the NICU with a feeding tube until they could eat enough by mouth. My kids never got that care. I just got accused of not being able to take care of them. Even the nurses couldn’t get them to eat much.

This horrified me and I was able to mobilize some people who I knew would rally for me. One was a county health nurse that I specifically let into my home to create an ally for this exact situation. Although she was mostly helpful and did keep my children from being taken away from me by the hospital staff, She also asked me if I wanted to give my kids up for adoption. Do other mothers get asked this if they don’t bring it up first? I haven’t heard of any.

I had started to learn over time that people who judge you and think that you will fail at something really want to be right about their judgement. So they will do things to help their prediction come true. I remember when a couple of my high school classmates became pregnant. I noticed that people who thought they were terrible girls who screwed up their lives actually caused problems to specifically make their situation extra hard. And this is what was happening to me. I did have some challenges: premature twins, a C-section birth, a recent eye surgery that made me have to adjust super quick to my new level of vision, a partner who–although did help me in many ways–was unable to help in other ways as we had originally planned. Those things were legit challenges. But instead of getting more help to meet these challenges, I got less help than any average person would even get. I got hatred and scorn. Not just by family and friends, but by the very people who were paid to be in positions to help me like lactation specialists and social workers. People wanted to see me fail and were keen to make that happen.

So all that caught up with me while sitting on the couch that one day while my babies were intermittently sleeping. Never underestimate what a serious lack of sleep with do to you to mess up your brain and make you unable to think straight and solve problems. I could not function and so it seemed like everyone was right and I was failing and there was literally nothing to be done but to off myself and let these babies be adopted.

And then I saw John Denver.

Yes, John Denver. I was hallucinating. Or more likely, coming in and out of minutes of sleep while sitting there and not even realizing it and having these micro dreams when I thought I was awake. Days before, I had been going crazy by the lonely quiet in my house. My eye surgery was a bit of an emergency. I had no time to prep my house to adjust by marking buttons or things I would use. So I had been just aimlessly pushing buttons until things worked. I was looking for a CD or something to listen to music, but couldn’t see the labels, so I ended up finding a DVD that my dad had left of John Denver’s Wildlife concert. It took me forever to get past the menu on the DVD that I couldn’t see. So when I figured it out, I just listened to that thing constantly. And “Annie’s Song” seemed to comfort my kid.

So, of course, John Denver sat down with me and told me my main problem was that I needed to take a nap. “I can’t!” I said, ” there is babies and breastfeeding and pumping and formula making and diaper changing! How?”

“Just take the money!” he said as he threw piles of cash on me. “just take it, no one cares.”

“What?” I said as I jerked myself awake.

Later that day, my partner came over with a number for a nanny service. he said we could get someone probably that night or the next night. And he said we will just deal with the cost with credit card debt or whatever. And I thought, “John Denver told me to just take the money. John Denver is my dad’s DVD.”

I called my dad. “Dad, I have made a mistake.”

“You mean, it was a mistake to have kids?” He asked.

Goddamn you people and your absolutes about my failure. “No,” I said. “I made a miscalculation with how many people I thought could help me and what (my parter) would be able to do. Its a temporary issue and I will get a handle on it. But right now I need to sleep and heal and get my energy back. So I am going to stop paying you rent for a few months, OK? Think of it like the money you never had to use for a wedding or college or whatever. It can be like your baby gift that would really help me out a lot”

He never said ok, but he never got mad either. I just took the money. I simply stopped paying him for a few months, then I resumed. He just let it go. I saved $3600 in rent. I paid out about $6000 in nanny fees over the next three months for a nanny to come 5 nights a week. By the time the kids were 6 weeks old, I was feeling pretty ok and out of the fog. By the time they were 3 months old, they were eating, we had a routine, I let the nanny go with my thanks, and I was joyously happy to be a mother.

Most problems are temporary. Don’t let anyone tell you that they are permanent, or worse, your personal permanent failings that you can’t overcome. I had a temporary problem that had a fairly easy fix. I do appreciate my dad helping me out. He also came out and made his lap available to plop a baby or two in when needed. The fact that when I needed help for a temporary problem and so many people were ready to jump to take my kids away permanently is a lesson that I will never forget. Although it is fine to get advice from others, I will never let anyone define my problems or dictate the solutions again.

Although there have been some bumps and snags along the way, the vast majority of my time parenting my 3 kids has been positive, fun, loving and good. That period, just two weeks after I became a new mom and I hit a hard wall was the bottom and it all went up from there.

But the ablism and exclusion continued over the years, and I still have to say that it was something I didn’t predict when I thought about being a blind mom. Of course it wasn’t everyone, but time and time again, my kids have been treated differently because they have a disabled parent.

Although some family members came around and developed relationships with my kids, others never did. I am not speaking about family with good intentions that live far away and are busy with their own lives, I get that. I am talking about living less than a mile away and my kids never getting invited over for family holidays. For some, being disabled means you need to stay in your place, and not want too much or go beyond just being a meek and grateful little disabled person who doesn’t ask for too much or do too much. And it doesn’t matter that I have raised kids without help for X number of years, I am still a disabled person who didn’t know her place. Some people are set in their ideas about your capabilities no matter how much you have accomplished or how hard you try to educate them. It is difficult when ablist attitudes are stronger than love.

So, they missed out. On birthdays and Christmases. The wonder of the first visit to Santa and coming down the stairs to see what was under the Christmas tree. First words, first steps, first day of school, first play, school graduations, all the things, they were there for none of it. They missed out. But bizarrely, every so often we would run into each other by accident. And then it was all hugs and smiles. Sometimes, my kids wouldn’t even know who was coming up to hug them because it had been so many years since they had seen them.

I have a friend whose family was excluded by her grandparents due to religious differences. She was the first college graduate in the family. Upon her graduation, the grandparents took her out for dinner. Everyone was acting like they had known her for her whole life. And later she said, “That was the weirdest thing ever. I just kept thinking, I don’t know you and you don’t know me. And you know what? You missed out. Because I am awesome.” That is kind of how I feel. We aren’t a perfect family but we are a loving, pretty awesome family. and you all missed out. Just because you wanted us to fail and we didn’t.

The exclusion we felt from members of different communities was a whole different beast.

Of course, not all people fit into this category and some were very nice. But many, many times, my kids missed out because of people’s judgement of me as a disabled mom. They missed chances to socialize with kids because their moms wouldn’t let them. I remember my child taking a liking to another kid and my husband invited them to a play date at our house. The mom said, “well, we don’t know you.” So then my husband said we could get to know each other by maybe going to a public indoor playground. “no,” she said, ” I’m sorry, I just don’t really want to know you. I don’t think we can really have anything in common with blind people and so I don’t want my kid to get attached to your kid.”

Another time a group of moms would go to a play space after church service with their kids. We couldn’t go because we couldn’t get there by bus. I suggested we go to another one that was more accessible, at least some of the time. “No, sorry,” they said “We don’t like that one and don’t think we should have to go there just for your kids.” It was hard for my kids to see the other going off together every week when they couldn’t go.

There was the time when my kid applied for a program that was within a school he already attended. It wasn’t really highly competitive or anything, it isn’t like there were not enough spots. But from the beginning, the teacher always expressed concern about my child being “ready” for this program. I asked if there was an issue. She didn’t know of one but was just “concerned.” I asked his other teachers if there were any issues I didn’t know about or whether they thought he wasn’t ready for the program. They said no, he was fine. But this teacher systematically made trouble for us at every turn. First she got mad that we dropped him off too early, even though it was within the drop off time. Then she got mad that we dropped him too late. Then he fell and hit his chin and she acted like this was evidence he shouldn’t be in the program (he was 6, it happens). Every day we got a new ‘talk’ about him but nothing specific. I went in to observe. him and he seemed ok, but she basically ignored him all day and never called on him when he raised his hand. I could tell he was bored so we withdrew him. It just felt like a needlessly hostile environment.

Or times when parents at school functions would sneak out of the room and not say hi when we entered, or move to a different cafeteria seat when we sat down next to them, or refused my offer to babysit then turn around and tell someone else that they have trouble finding childcare. Or just the implication all the time that my kids were “at risk” or “from a troubled home” just because we are disabled parents. Or all the questions they field about how they must have to take care of us. Or just a general “othering” of us. Not getting invited to things, Not getting the same opportunities. Again, I will say that this is not everyone all the time, but it is enough that it does affect my kids in ways I never accounted for or imagined. And no, I am not the only disabled parent to have these experiences. For parents with a visible disability, these incidences are very common.

It makes the kids less trusting of people and it makes them be super sharp in seeing when they are unfairly judged. It makes them a little wary about getting close to people. It makes it so they did not get some of the same chances to be involved in activities and relationships as other kids. It is hard to watch because there is not a whole lot we as parents can do about it. We talk to them about not taking it too personally and that it can be a litmus test to weed out people they might not want to know anyway. But often, sadly, the other kids are not the problem. It’s the parents who are overly biased and they are making it hard for their own kids as well as mine to become friends.

It got to the point where when they were old enough to start going places on their own (which happens earlier for our transit-savvy kids that others) we started staying away from their activities for the very purpose of limiting the amount of crap they have to deal with. It seems like between the choice of being thought of as slightly neglected kids with uninvolved parents vs. having involved disabled parents, the neglected kid scheme gives them a better deal. Its just sad, really. We try not to miss the big stuff still, like performances and big events, but we have purposely stayed out of the way to give them a chance to make headway on their own. Sometimes when we do show up and meet people they associate with for the first time, they have to absorb the shock and bias from other people. Families that were previously nice to them suddenly back off, and they never even talked to us first. It causes issues.

One time this teacher decided to be very concerned about my son because she felt “so sorry for him to have blind parents.” He went to a football game with strict instructions from me to take a specific bus that was right there, but the last bus stopped there at around 10:00 and I wanted him on that bus. He called me, sounding kind of freaked out because he missed his bus. The science teacher kept telling him he couldn’t get on the bus because it was dangerous. She went as far as to kind of physically block him from the gate out. He didn’t know what to do. When he finally had a chance to “escape”, he had to walk about 8 blocks at night to catch the nearest train when he would have been fine to take that bus. He was calling because he thought someone was following him. He said he thought it was the science teacher, but he couldn’t be sure and it was freaking him out. The car was waiting across the street in a parking lot after following him slowly behind to the train station. He was so freaked out, we FaceTimed his entire way home. Later I found out that the teacher WAS following him. I told her that I understand that she probably meant well, but she obstructed him from getting on the bus he was safest to get on, and then scared him by following him creepily to the train station without telling him. She basically thought I was an abuser because I made an almost 15 year old ride a bus that stopped right there and then took him 1.5 miles home. I was a shit parent because I didn’t drive and made my kid ride the bus, something he has done since birth and is comfortable with. I told her she was being biased towards people who use different modes of transportation. I could judge other parents who put their kids in cars. Cars are 20 times more deadly than trains and about 10 times more deadly than buses. Why is that risk ok? My son never wanted to go to another football game after that because he was afraid of his science teacher. (And then the pandemic happened and he changed schools, I think he would have tried again eventually.)

Blindness did not make parenting hard. Ablism did. Having blind parents wasn’t so hard for my kids, people’s shitty attitudes were.

When I think back to the 18 years of parenting these kids, I think I had a plan A, B, and C for everything. But I didn’t consider how much the ablism I experienced and was used to would rub onto them. I think I am pretty much past being overtly angry about it, and I don’t mean to call out and scold people so much as I would like people to think about what they are doing. If some child or family makes you uncomfortable to approach and include, take a moment and ask yourself why. Is it based on ignorance? Is it based on some unconscious bias? Might getting to know them a little better help you get over this bias? People could bring much richness into their lives if they could be just a little more self aware of their own reasons they are excluding some people. I also know that there were always a lot of people who were never overtly mean to us, but who just never engaged with us more than they had to because we “weren’t like them” and that made them vaguely uncomfortable. I would argue that we are much more alike than different.

I was helping my son pick out pictures for a college project that he is doing where he has to do a little bit of a retrospective of his life. We went through 18 years of pictures, thousands of them. It was amazing to me to look back and talk about the last 18 years of our family life. We have done so much fun stuff! We traveled to different states and countries, went on countless “field trips” to museums, plays, science centers, beach weekends, hikes in the forests, school events, swimming lessons, etc. Then there were all the birthdays and holidays and the gifts and traditions like Zoo Lights and Easter on the Willamette River. There was just the goofy things like pretending to be Star Trek crew and putting on little plays to lego builds and funny voices. There was gardening and airplane building and Taco Bell drive thru ducks and Mock Trial competitions. We have had so much fun as a family these last 18 years.

But with a few exceptions, we were in these pics mostly alone. Just us. Recently my youngest son and I went to visit my relatives in the midwest and he remarked that he had never been in anyone’s house before. That isn’t entirely true, but it is pretty close. All of my years of going to church, volunteering there and at their school and we were often still the odd ones out, relegated to nothing more than a polite “hi” at best or at worst, people being openly hostile to us. I don’t know if I could have tried any harder, been any more welcoming or done more to make people feel more comfortable because I feel like that is all I did for years. And then because there is no community, you end up doing everything yourself so you have less time to give to others and it becomes a self fulfilling prophecy.

Now, my little premature twins who made me a mother are going to go off on their own in the next year or two. They will have the option to a degree greater than ever before, to leave the disability world behind and and forge their own, likely less marginalized identities. It’s weird to think about them shedding their minority status. When we traveled last summer, we would go through security and as happens every single time, their dad and I were pulled out and had to do extra security at the TSA checkpoints. When the kids were younger, they would get pulled out with us, but now they just walk on through. My son wrote part of a college essay about it. How he gained privilege he didn’t even understand completely that he didn’t have before. It’s so weird, but it is true! I think when they go off further from us, this kind of thing will happen more and more for them, and I think they are in for a bit of a culture shock. I hope that they will both enjoy the new privilege and also remember to appreciate that others don’t have it. I feel very positive about many aspects of them growing up in the disabled community. I thing that it has given them powerful lessons they will use throughout their lives and are the better for it.

But I am still a bit sad, not so much for us or them but for you. You who (probably aren’t the ones who will be reading this, but) who missed out on everything my funny, smart, creative, mostly happy and often giving children had to offer. And you who missed out on how much fun it was to watch them grow up. And you who let your feeling of uncomfortableness limit you from everything our family has to give. I am doing some ruminating here, and again, I am not mad at anyone, just want to say…try harder. Try harder to move past your feelings of disgust or awkwardness or whatever it is you can’t get past. Try harder to include everyone. You may reap more rewards than you ever expected.

And if you are a disabled person contemplating having children, I still absolutely think it is worth it. Just be prepared for the reactions of people and don’t let it get to you. Try to build community beforehand so you don’t waste so much time on a community where its just never going to happen. Look to other disabled parents locally, too. I do wish now that I had just spent more time with the blind parents that are around me, even if most of them were all on the other side of town.I got invited a million times to “Mommies with Guides” groups and didn’t go because they were too far away, or seemed too “precious” or seemed too much about new blind parents talking about non visual parenting skills I already had. But I probably should have invested more in those groups so that my kids could have developed those long-term relationships with other parents and other kids. Don’t take for granted that your family will be happy for you that you are pregnant, and be willing to help out the first couple of weeks like other families often do. Although I did not hide my decision to become a parent and talked about it often in the 2 or so years I was working on conceiving, I never sat down with anyone and ironed out all of their concerns and made a plan for who was really willing to help and who wasn’t. There is a point to where people will not take you seriously, and so you probably just need to not count on their help. Also take some time to collect some professional allies. Programs such as Healthy Start, WIC or La Leche Leagues are good to reach out to and get to know you BEFORE you are vulnerable because you are recovering from childbirth. This I did do, and I think it saved me in the hospital when my parenting was questioned.

If you don’t have anyone who is willing to help you, it is ok and legit to hire help. This doesn’t make you a failure or prove anyone right about disabled people being incompetent parents or whatever. You have to own it. If you think you will need paid help, get a plan beforehand to both find the help and pay for it so you aren’t in a crisis like I was. (It will be much cheaper, too!) Also–and I think I have done a pretty good job about this–constantly educate your children so that they can develop an inner self confidence that is not dependent on what others think. Be really open with them about marginalization and oppression we face in the world, so they will learn to identify it and not take it personally when they are excluded. Also, as I have mentioned many times, there are always people out there that will support you, you just have to find them. You will have to look longer and harder than everyone else. Keep looking, keep educating, keep trying and you will find them. They might not be where you wish they would be, so maybe not at church or your kids’ school, but online folks are rooting you on. There is absolutely nothing wrong with developing internet relationships (and helping your kids safely do the same). People are out there and ready and willing to rally for you and your kids, but you will have to cast a wide net to find them. Keep casting and don’t give up. Finally, enjoy your beautiful family, no matter what the naysayers say. Know and appreciate in your heart what you have and know that you (and your kids) deserve the life you have built together like no one else ever could.

When I decided to become a parent, I had thought I would do it more or less like my mother did. She was a career woman, my sister and I went to a home-based babysitter who became like a grandmother to us, and my mom worked full time. We went to public school and in upper elementary, we were the proverbial “latch key kids” of the 80s, watching ourselves for the 1-2 hours before and after school. My parents went to work, I went to school. My school was my responsibility and besides going to parent teacher conferences and the occasional school event, my parents stayed out of my education.

When I was trying to conceive, I worked full time as a research associate at a university. My pay was decent and I lived in a nice 3 bedroom apartment with my long-time companion/partner. We had family down the street. No, there wouldn’t be a ton of money, but enough, and enough stability to raise a child. I figured I would take my 12 weeks maternity leave, have found a good childcare setting and go back to work. I knew the first few years of having a toddler in childcare all day long would be the hardest. But eventually, my child would go to the neighborhood public school, then go to maybe an after school program or come home to a house that likely wouldn’t even be empty, just like I had done.

Then life intervened.

The first thing that thwarted my plans was twins. I was having twins. Even though I had taken all the precautions in working with my doctors to try to conceive to avoid a multiple birth, it happened anyway. When I checked on childcare for infant (12 week old) twins, the costs were astronomical. I would be paying up to $2400 per month for childcare. I pretty much might as well just stay home, it would in some ways be cheaper.

Then, at 33 weeks into the pregnancy, I lost my vision. I had a retinal detachment. In all my preparations about seeing whether it was safe for me to become pregnant because of my Alpert’s syndrome, no one indicated that I would risk losing vision. No one had ever heard of this happening. So, I laid awake during an eye surgery that would need follow up surgeries, and I contemplated how I couldn’t even use my computer anymore. It had been too long since I had blindness training and I didn’t even have the right software on my computer. I knew I could adjust to losing more vision, but I also knew it was going to take months, along with having two babies to take care of. I didn’t know how I was going to keep my job, so I had to quit. Luckily, I was still doing attendant care work part-time, which I knew I could do again eventually, much easier than going back to a full-time job…at least for now.

Then my twins were born a bit prematurely at 34 weeks and I could see that even if I would have been ready to go back to work 12 weeks postpartum, they would not be ready. They couldn’t eat properly yet, they were only 5 pounds, they were tiny and they needed significant help getting enough calories down in the first 3 months or so. My local kinder care was not going to take them anyway until they put more weight on and ate without needing so much support.

So, in the early days of my first time foray into parenting, my life was very regimented and involved pretty scheduled round the clock care for the twins. When your kids don’t seek out food and fall asleep after seconds of attempting to suck and you are feeding them drops like a mama bird to her chicks, there is no “feed on demand.” You feed on a strict 2.5 hour schedule, with sleep in-between. My life was slowly wake them up, change them, feed them, let them sleep…repeat, repeat, repeat. And that is all I did. In the minutes I had here and there between feedings, I slept, worked on my own adjusting to blindness stuff, and ate. Work, even attendant work, went out the window.

But as the kids got a little older and heavier and started to eat better and stay awake more, I started having “school.” It was just playtime, but since the schedule was still pretty regimented and I was so bored, it became a bit of a ritual. I would have them do tummy-time, I’d sing songs to them, I’d do some range of motion things with them, I’d give them little Montessori-like tasks to do like having them reach for things or find something under a blanket. It was built into the schedule along with feeding and naps. I didn’t consider it homeschooling at the time, but when I look back, that is when I started homeschooling, just like all parents do.

I was eventually able to go back to part time in-home caregiving work, taking my kids with me. But I was also starting to look at preschools. I still could not afford a regular daycare-preschool. But I looked into a parent coop preschool where you pay but also do volunteer hours. It was a good program, but the volunteer hours were about 8 hours a week, which most people did when their kids were in the school. Because I had twins, they required that I do 16 hours a week, and I had no one to watch my kids during the extra hours I would have to do outside of the time they were in class. It wasn’t going to work out.

But someone told me about Village Home Education Resource Center (VH), and this was where my real cognizant homeschool adventure really began. I had just heard that I could go to a sort of “mommy and me” preschool program there once or twice a week, and there were community duty hours required, but it was more on the order of 5 hours a term, and they did not make me do twice as much because I had twins. So that is where we started, at Terry Jordan’s “Little Villagers” class. And this is where I met the homeschool moms and started my second “college education” in education.

My son will tell you there are two kinds of homeschoolers, the religious ones and the hippies. (I would classify them into three main categories, the religious, the hippies, and the public school exiles, but more on that later.) He would say the VH parents are in the hippy category. And I would agree. In Portland, most of the homeschoolers are pretty left leaning. Village Home was a manifestation of the type of homeschooling family you found here on the “left coast.” But when I had conversations with the founder of Village Home, she told me how when she started homeschooling several years prior, it was the extremes on both ends, but the range was getting filled in the middle. And she saw the need for a community that catered to a middle ground. Village Home is a learning community for homeschooling families that provides classes that kids can pick from each term. It is more like a community college but for K12. There were some floofy, woo, flowers-and-herbs for breakfast flowy dress moms there for sure. But it was pretty mainstream. Very few families were that far out there to either end. For me as a nondriver who wanted my kids to have community and classes I couldn’t easily teach all in one place, it was a great discovery. More than the parents, though, I enjoyed the kids. These kids were mature, eager to learn, sociable, polite, respectable, creative, dedicated kids. Oh, THESE are homeschoolers? THIS is what homeschooling can produce? I had to find out more.

Lots of books were recommended to me. And so I started reading and researching. I did have the ideas of homeschooling kids that you hear quite often by those who have not given it too much thought. They won’t keep up with their peers, they will be weird and uneducated. They won’t have any friends and won’t have any social skills. It is some mom sitting at the kitchen table with her kids all day, teaching them that the earth is flat and that Jesus rode on the backs of a stegosaurus. I had all those preconceived notions that you still hear today. But look at these homeschooled kids! They aren’t any of those things.

I read John Taylor Gatto (Dumbing Us Down) and John Holt (Unschooling) and Susan Wise Bauer (The Well-Trained Mind) and Grace Llewelyn (The Teenage Liberation Handbook) and Alfie Kohn (Punished by Rewards) and Jonathon Kozol (Savage Inequalities) and many other homeschool books. I researched websites that talked of the studies that have been done on homeschool outcomes. I found that on average, homeschool kids–no matter what race, socioeconomic level, parent level of education, or gender–got two grade levels higher than public school kids on standardized tests. They also did better on adaptive behavior scales. They also were not only becoming more and more accepted at colleges and universities, but they were sought after due to their ability to be self determined and manage their own learning so much better than many public school kids. Aside from very expensive private school students who were largely all white and upper middle class or upper class, homeschooled kids achieved the greatest outcomes. It was the poor man’s private school option.

What I learned about homeschoolers also dovetailed right in to everything I had experienced in my Teacher’s College training. Especially in special ed. Homeschool was the very epitome of low student:teacher ratio and individualized education. Curriculum and instruction could be tailor made to each student’s zone of proximal development. Kids can have more buy-in to what they are learning because of such customization and if something doesn’t work, you can just instantly try a different approach. The freedom of this can have amazing results. There is no “catching up” or “getting behind” because the speed can be whatever you want, and can change pace as needed. There is no wasted time, there is little boredom, there is the whole world as a classroom.

It all looked good to me, but I did not make my final decision until the day we went to the “kindergarten round up” at their local school. When I dropped them off in the kindergarten classroom, I saw that there were 54 kids in one room with 2 teachers. The room was partitioned by some little toy kitchens and bookshelves meant to be two classrooms, but in essence, it was 54 five year olds in one room with two adults. The parents went off to a meeting in the library. I thought they might talk about the programs they had or what the kids would learn, but almost the entire thing was about how to drive your car to drop off and pick up your child. This seemed to be the biggest deal and the biggest concern. They talked a bit about bussing, but nothing was said about the fact (that I noticed on the way there) that the school was surrounded by streets with no sidewalks and some busy roads with no traffic lights. Kids weren’t really safe to walk to this school. I snuck out a few minutes early and went back to the kindergarten room where my kids were. It seemed they had them making a necklace on a string of fruit loops. My kids were doing ok, but I could tell the noise level was getting to Aaron. There were kids there that were just bouncing off the walls. It was loud. My kids were done with their necklaces, and they wanted to go out to the playground right outside the classroom. I asked the teacher if that would be ok. And she said that she needed them to sit quietly at their table until the rest of the class were done. I told them to follow her directions, and I understood why she needed to do this. If my kids went outside, the bouncy kids would see that and create more chaos. I felt like the teachers, with 54 very young and new-to-them children, were barely keeping it together. I watched my kids sit at the desk, not unhappily, but just kind of….wasting their time. And I thought…I can do better than this. By far. So I asked them, “Do you want to go to kindergarten here or do you want to continue going to village home and work on learning to read and do math at home?” And they said they wanted to stay home. They both thought the room had too many kids and was too loud. And so we were officially homeschoolers.

There are lots of ways to homeschool, but almost no homeschooling parent replicates the 6 hour school day of public school. There is no need to as the class management piece is not there. In a college class, I was told once that elementary students get an average of 46 minutes of instruction a day. The rest is procedural. (It might be more now that recess and lunch have been shortened and eliminated.) So, it was always obvious to me that school is 10% formal learning and 90% babysitting. When my kids were young, we aimed for an hour of formal school a day, sometimes split up into two sessions. It always included reading and math, and then social studies, science and art, PE etc. were much more ad hoc. Sometimes they weren’t done, and sometimes they took the whole day when the kids got really into something. But we tended to do our 30 minutes each of both reading and math and then one or two other things. We went on LOTS of field trips, and lots of group activities and outside time. The world really was their classroom. It was a lot of fun most days.

I started noticing a few things that would have gotten my kids labeled in school. As a trained special ed teacher, I have a bit of an eye for such things, but I also noticed that at home, they were almost irrelevant. Tiny adjustments took care of most of these things. I could tell early on that Naim, were he in school, would likely get identified as having a reading disability and possibly a working memory/executive function disability. Aaron possibly would have been identified as ADHD or autistic (which they would have labeled “high functioning” autism). There were a couple of minor things that were ‘a little off’ about my precious twinnies. Maybe it was due to the prematurity, maybe it was genetic. Naim seemed to be a lot like my dad, who had some the same learning disabilities. Aaron’s bio dad and bio siblings seemed to have a touch of neurodiversity running through them. But as homeschoolers, it really didn’t matter. We had the time and space to work things out for the most part.

Dyslexia is a print disability, just like blindness. As a blind parent, I dealt with Naim’s dyslexia by teaching him to use blind people strategies. I taught him VoiceOver on the computer. I hooked him up with Bookshare, I made it so he could read his math story problems outloud and see if he understood them. I also taught him to read. I tried the Orton Gillingham method, but it confused him more. He just needed lots of phonics repetition. Enough so that information passed from his working memory to his long term memory. He also struggled to copy things in handwriting. So, I taught him to type, and saved the copy work for things like math. Naim never really got behind in anything except maybe reading, if you really care that your kid reads at 6 instead of 12.

Aaron’s issues were a bit harder to define and not something that I fully realized until years later. Aaron has never had any trouble academically. Aaron starting identifying as female when she was 15, but seemed to be a typical boy as a child. She excelled at building and following printed directions, had an excellent sense of direction, learned to read without me really even working that hard with her, and had good hand-eye coordination and and eye for artistic and aesthetic things. She could also be incredibly destructive. She would tear apart stuff just to see how it works. She got a knife and stabbed my couch just to see what was in it. She would deconstruct the toaster in 3 minutes. It was hard to turn away from her very long. I started locking stuff up in a cupboard with a padlock. At three, she disassembled the entire locking mechanism to get into the cupboard. There was never enough places “up high” or “locked away” for Aaron. At the time, I didn’t see it as neurodiversity, just high energy and creativity. Although frustrating at times, we dealt with it as it came.

When the kids were to enter fourth grade, I decided they needed to go to public school. They were doing ok, but I wasn’t. Looking back, I think I was just burnt out. My husband had lost his job that year and we started a new company that was slowly ramping up, but not creating a lot of income yet. I was homeschooling, working 2 part time jobs, plus work on the company to try to make ends meet. I needed for something to give, so I decided that the twins could go to school. In May of that year, I walked in to our local public school, the same one I’d visited before, and signed them up to start in the fall.

The administrators there talked to me about my kids and what their educational experiences had been up to that time. They were very concerned that my kids had never been in the classroom before. They thought they wouldn’t know how to line up, to come when the whistle blows, to be quiet in their seats. There was a lot of not at all veiled prejudice about their homeschool status. I said they had been in classrooms. At VH, at the science museum, and church Sunday school, at Saturday academy and zoo camp. They knew how to line up, follow directions, etc. MY concern was about Naim. Naim was grade level in everything but reading. He used VoiceOver for science and social studies. He used the computer for some his written work. I did not want him to not be able to keep up in stuff because he was a slow reader. It wasn’t so much about “keeping up” per se, I just didn’t want him to get the idea that he was stupid when he wasn’t. I asked what could be done, could we do an IEP? I expected the process to start, but they said that he would need to be there at least a year and show that he was failing before they could start an IEP. I thought that was ridiculous. I had already had Naim tested and also he had done the state required standardized tests for homeschoolers. It wasn’t like data wasn’t available. But they said they needed to take A YEAR for him to fail before they would make a move for an IEP. I asked if he could be informally accommodated or could we do a 504 plan? They said there would be 36 kids in his class, there was no means to informally accommodate him. The thought of all the kids reading in science and my kid just sitting there bored as I had done so much of my schooling because I couldn’t see was not something I wanted to waste year of his life on. I walked out knowing that I could not justify putting Naim in public school.

But I left Aaron in, and in the one semester Aaron was in public school, she became unrecognizable as the joyful kid I had at home. I was called constantly to the school, not because she was causing a disruption, not because she was hitting a kid or being mean to the teacher, but because she was “doing her own thing.” I get that some of this was probably a period of adjustment to public school and a classroom with 37 students. I thought it could have worked itself out. But the teacher was calling me constantly. Aaron developed this level of anxiety and was sliding under the desk and just zoning out. She had been at VH, at camps and other classes, and we had been able to work things out for her, but here, they just called me and wanted me to what???? I didn’t really know. I could tell her to listen to the teacher, try her best, hang in and it would get easier, but they quit on her. They would just call me and have me come there and then tell me that they didn’t like her handwriting (an admitted teaching weakness of mine since I am blind. I had them do most things on the computer so I could read it. With my younger child, I have now developed other methods to having him practice handwriting that I can’t see. But Aaron and Naim probably had less than average experience with handwriting.) I don’t have an problem admitting that I was not a perfect teacher and that my kids might have gaps. But the teacher would just tell me, I don’t like her handwriting. ….OK. What would you like me to do about this? Can you not work with her a little more on it? Aren’t you the teacher? I am willing to help, sure, but offer me something specific to do then? Same with math. Aaron has never had difficulty with math. Ever. But all of the sudden, she didn’t get the math. And there was no book that I could get off Learning Ally or anything, it was just worksheets I couldn’t see. So I couldn’t easily help her in math. I lost all control over having an accessible curriculum. I felt like, ok, you aren’t going to teach her, you just want me to teach her at home. Which is really HOMESCHOOLING, and what I was doing anyway. I didn’t blame the teacher entirely, I just thought she had too many kids. But she called me constantly and offered me nothing, just that I should work with Aaron at home. Ok, putting Aaron in school was turning out to be much more work than homeschooling, and it was less effective, and she was very unhappy. But since her grades were ok, she was doing good or average in everything, they said she couldn’t get evaluated for any services. I was on my own. I felt like the teachers and staff gave up on her for problems that I thought were relatively minor and could have been solved, but by the end, they practically told me that they weren’t going to do anything, and I had to get my kid out from under the table on a daily basis.

(It was Naim that had the final straw with it and told me we should take Aaron out of public school. We went one day to have lunch with Aaron and watch a little recorder recital her music class was doing. They gave us 7 minutes to eat. And halfway through, they made us gather all of our stuff up and switch tables so they could wash the table we were on. They apparently did this every day. Naim, who highly prioritizes eating, was APPALLED!!! Barely 7 minutes for lunch and maybe 5-10 for recess and you had to MOVE TABLES? This was sacrilege to Naim.)

I was pissed off. Because it felt like I no longer had a choice to homeschool my kids, I HAD to homeschool my kids. And furthermore, the school was pretty much counting on me to homeschool my kids since I had already done it so they weren’t going to work with my kids on the few minor things they needed to work on. When I was in teacher training with special ed kids with complex disabilities, people said my students were just too disabled to gain benefit from the regular classroom. But my kids were getting As and Bs and they didn’t have significant disabilities and behavior problems and there STILL was no benefit to public school for them. My kids are not perfect but compared to the variety of kids that end up in public school, they were easy. They always showed up, they never mouthed off, they followed directions and were relatively quiet, they did most of their work, they had pretty good grades, but because my kid slid under the desk when she didn’t understand something and my other kid had the pretty much easiest learning disability there is, they weren’t going to do anything to make it work for them. Why? because the fourth grade teacher is one adult with 37 very different and needy kids. And she was under tremendous pressure to do things a certain way, get testing done, and get kids from point A to B in a certain time frame by the school. As a broken clock is right twice a day, so will there be a handful of kids that public school does well for. All the others just fall though the cracks of this assembly line education. As I had said before, if it doesn’t work and isn’t good for the most disabled kids, its probably not really that great for the rest of the kids either.

My compromise for my overworked situation and having to pull out a couple of kids from public school was that I put them in a (public) hybrid online/inperson program. And they did a version of this for the next 3 years. They attended the in person classes once or twice a week, and took some of the online classes. It worked ok, but here is where I found the third group of homeschoolers, the public school exiles. Most again, were really nice kids that might have had some minor issues in public school but they were blown so out of proportion or their needs weren’t being met so here they were. Even though these teachers were in the same district as the neighborhood public school, and they had a whole small school of mostly public school exiles, they did a better job being flexible and actually teaching these kids. The ratios were much lower, and the rules were a LOT more flexible. The kids were only required to do what they signed up for and could do it in a bunch of different ways. For me and the kids, the hybrid online school was not as fun as what we used to do, but it wasn’t bad, and it left me more time to work. It goes to show that public school does not HAVE to be this way just because it is public school.

So, that was when homeschooling became concrete for me and we became a homeschooling family. Homeschooling is a lifestyle choice that affects the whole family, and it is hard to parse it out as “just” about education. but that is how I got there and how I learned that public school made us become homeschoolers (pushed us to practically against my will) more than we chose to be homeschoolers on our own. Oh, it was both, I suppose. But I don’t regret it, and it has mostly been a great decision for my family.

Currently, Naim and Aaron are enrolled in Baker Early College, which facilitates high school kids to attend their local community college and earn credits for both high school and college. They are 11th graders and are looking at colleges to transfer to in the next year or two.

Aaron’s neurodiversity became more apparent as she got older, and she struggled with her gender identity for a while until coming out as female a couple of years ago. Trans issues are not something I feel like I am an expert on, but my goal has always been for her to feel safe and loved in our home and community so she can grow into whoever she wants to be. She has some autistic traits, like being sensitive to loud noises and visuals, taking things very literally and being very exacting in what she does, which can mean that she struggles with anxiety. But she has made huge progress and had the time to just “be” (with a little help from the pandemic.) She has a B average at school, loves art and history, and is a bit of an academic She has executed projects like starting an online streaming collaborative and building Minecraft servers. She is currently in a program where her and a group of other students are building an airplane. She has a dry wit and is the family baker, where she is always pushing us to try new, exotic desserts.

Naim, also a junior in the dual enrollment program, is very proud of his 3.96 GPA. He has a 504 plan, which he didn’t need to fail for a year to get, and still uses print disability accommodations in a lot of his work. He is an admitted policy wonk. He has interned in the county Democratic Party office, a tax accountant office and the local city government. He holds an officer position for a. youth led advisory group to the city council and works at a fast food restaurant. He loves improv and can always make us laugh. He has participated in mock trial and model United Nations through VH.

They both, along with my 12 year old who I still homeschool, still attend classes at Village Home.

(Yup, I said it.)

As a blind person who could never drive, I have slowly found ways to adjust and adapt over time to “my problem” of not being able to participate in car culture. I first came to grips with it in high school, when everyone else was getting their licenses except me. Then I went to college in a very small town so I could walk everywhere, but the town was not big enough to serve all my needs and there was no way out of it without begging for rides. I lived in a couple of mid-sized college towns, which tend to cater a little more to nondrivers as many college students don’t have cars. I dealt with no Sunday buses and routes that ended at 6pm. After college, I knew I had to get out of the Midwest if I was going to have any kind of life. I couldn’t even visit my parents independently. I had to move to a big city with decent transit. Even though it would be a higher cost of living and I would still struggle to find affordable housing near good transit, I knew it was the only choice I had to deal with “my problem.”

It was my kids who helped me stretch my imagination beyond car culture and start to discover that driving (and my exclusion from it) was not just my problem. Cars and the way that almost all of society revolves around them (especially in North America) is a huge problem for everyone. Everyone needs to rethink the role that vehicles play in our lives and how much we are giving up to have this car centric lifestyle.

Unlike me, who grew up riding in my parent’s backseat, my 3 children have rarely ridden in cars. They grew up riding light rail, buses, and doing their fair share of walking. The would say stuff as little kids that would stop me in my tracks. We would get off a bus stop and start walking across a half-empty multi-acre parking lot to a strip mall and would say, “Why is there all this space for people to park cars? What if they changed all this into a playground?” Or we would be waiting in heavy rain at a (non traffic lighted) intersection for cars to stop and let us cross and they would say “Its really rude that we have to wait for people in their dry cars and they don’t even stop for us when we get rained on.” Or when I would explain to them the patterns of cars when they turned right on red and how they would never, ever watch for pedestrians so we had to watch for them and wait even though it was our turn to walk, my kids would say “Well, who came up with this rule? That’s completely stupid!”

My youngest kid became a railfan—which apparently is really a thing—and started following some Youtubers and Instagramers who are train fanatics and I started learning about the safety and potential of rail. Then one day he saw a meme from a group on Facebook called “Fuck, and I can’t stress this enough, them cars.” I can’t remember the meme, but I know that it said “BAN CARS!!” on it. And from then on, whenever we were out and cars did something to irritate us, someone in my family would inevitably grumble, “Ban Cars!” As almost a joke, I joined the facebook group, thinking it would just be some temporary fun.

Although there was a lot of sarcastic humor on the group (they are all way funnier than me), there was also just a lot of good, thought-provoking and well researched information on the page. Most of the members are bicyclists, but there are a handful of disabled people. I cannot ride a bike (well, I can with a tandem, but that involves me finding other people to steer and more impossibly, overcoming my control freak issues), so getting a peek into the world of those who use bikes as a regular form of transportation was really new to me. There are also people from all over the world on this group, so the perspectives and methods that people from other countries use to deal with getting around are refreshing when everything is usually so American-centric. What I’ve learned from this group, and from using it as a springing off point to learn more, is that—um, you guys—Cars/vehicles are really, really bad for us as a people, and for our planet, and are going to be our downfall if we don’t do something to change the way we think about transportation. And, also, that is does not have to be this way. Being excluded from transportation because I am blind is not really the problem, car centric culture IS the problem. It’s not only bad for me to drive, it is really, really bad for all of you to drive, too. And it doesn’t have to be this way. We can do better.

How bad is it? Let me count the ways.

Ecological Damage

The most obvious problem is that it is bad for the health of the planet to drive so much. According to the EPA, transportation creates 14% of greenhouse emissions, almost entirely from fossil fuels. Passenger vehicles contribute 58% of those emissions and heavy duty trucks create an additional 24%. Industry, which contributes 23% of emissions, also includes the manufacturing of cars and the processing and transport of fuels for them. Even with the growth of electric vehicles, that just shifts the burden to the producing electricity portion of the pie, which is currently 25% of emissions. People forget that when you plug in an EV, if it is being powered by coal, natural gas or the other usual nonrenewable resources that power electric sockets, it is just moving the problem further away from the car. Although this sometimes helps cities improve their air quality, those emissions are happening somewhere, and often disproportionally affect marginalized communities who are more likely to live near industrial areas and powerplants. Climate change is a complex problem (that is too massive for this post) with many interlinking causes that go beyond vehicles, but it cannot be denied that vehicles are a cause of a significant enough chunk of the issue that rethinking their viability is imperative.

Land Use

It took the imagination of my kids for me to really start to see the issues of land use and our dependency on cars. And then start to see it everywhere you go and you can’t unsee it. Somehow, it has become normal in our society to expect that everywhere you go, you are entitled to have a place to put your 3000 pound, 420ish cubic foot appendage. In my life as a pedestrian, there have been times I have had a stroller or luggage that I have needed to store in a public building. The amount of pushback I have sometimes received for asking for a few feet of space has sometimes been enraging, when you come to think of the fact that everyone else fully expects a fully accessible 10×18 foot spot for their monstrosity that they bring with them everywhere. I have friends in wheelchairs who still can’t fit through doors, and who can’t fully use public transit because of a lack of ramps or elevators, but every car lot and parking garage is fully ramped and has elevators. In my own home, I resent the fact that the biggest room in the house is a bedroom for a car I don’t have, and a chunk of my yard is cemented over for a car I don’t have. And I’m not allowed to change this due to a lack of different kinds of housing and residential and association zoning and rules. Acres and acres of land in prime real estate spots is used for parking, while homes remain out of reach for many and people struggle to keep warm on the streets while cars are snug in their free (or nearly free) spaces provided at taxpayer expense. These are priorities and choices people make as a society. Who do we accommodate the best? People or cars. In many cases, cars win.

This article talks about the massive amount of parking spaces taking up space in cities. There are tons of pictures on the internet where parking in cities is highlighted and it is a massive amount of space. In Seattle, there are 5 parking spaces per household available in the city. In Des Moines, Iowa there are 19 spaces, and in Jackson, Wyoming, there are 27 parking spaces per household. Just think, Jackson is providing 4050 square feet of free real estate at any given time FOR YOUR CAR. Most people’s homes are not even half that size. In Los Angeles, surface parking (not even counting garages) take up more land area than housing. One of the most entitled arguments that comes up again and again at any city meeting or public comment period on construction has to do with parking. Parking entitlement is at the core of discourse and mandatory parking space ratios that are not even filled with cars have wreaked havoc on our landscape. Having a close place to freely park brings more people to city council meetings than homelessness, environmental issues, poverty issues, disability access issues, and civil rights issues. Many of their successful bids for more parking are not based on logical projections of what is needed but is just a political appeasement to keep these loudest people in the room, the evangelical parking activists, happy. Every time I get off a bus and have to navigate my way across a huge acreage of undistinguishable cement to get to a store, I think about that comment my child made. Why couldn’t all of this be a playground? Or a park? Or affordable housing? Or agriculture? Or a rec center, or basically anything else but wasted, hot cement.

Additionally, freeway infrastructure also takes up a huge amount of space, as well as cutting pedestrians and bikers off from parts of their city, and often displaces entire communities whose homes are acquisitioned and destroyed to provide more highway space, clover leaves, on ramps, etc. Roads get continually widened when, due to the concept of induced demand, it has been proven that this actually creates more traffic congestion rather than alleviates it. A popular meme on the Fuck Cars page is “You aren’t stuck in traffic; you ARE the traffic.”

Safety

Several years ago, I was hit by a car. I was walking on a sidewalk and stopped at a driveway that went into a Target store. A car pulled up and stopped. I assumed the driver was waiting for me to cross, so I indicated to my guide dog to move forward. When I was walking in front of the car, it accelerated in an attempt to turn into the oncoming traffic. Although the car was not moving at a very fast speed yet (I’m guessing maybe 5 miles an hour?), it knocked me and my guide dog underneath the car. I remember going down and the car rolling partially over me. I had dropped my guide dog’s harness handle, but still had hold of her leash. It was only due to my dog literally jumping up from under the car and immediately dragging me out of the way that I was not run over by the car or pushed out into oncoming traffic. Although the car lurched to a stop for a few seconds, it skidded away. Luckily, I only had minor bruises and aches and pains, but I will never forget the sheer strength and force and weight of that car as it rolled over me. Even at a very slow speed, my puny human body was no match for its power. Although I rarely am in a car, in my adult life, I have been in 5 traffic accidents, from fender benders to ones where the car was totaled and people were hospitalized. In the past year or two, I can think of many tragic accidents off the top of my head. My cousin was killed in a T-bone collision. A friend of mine was out jogging and was clipped and dragged several feet by a semi. She was in the ICU for weeks and required months of hospitalization and rehabilitation. Another friend of a friend was a pedestrian killed in an intersection. Another friend of a friend lost her parents and her brother was severely injured when they were hit while waiting for a tow truck to load up their car. A youtuber I follow had her entire family hit by a car. Her husband was killed, she and her two children had severe injuries. I’m sure you have these same stories. They are super common. We call them car “accidents.”

Although I understand in most cases, the driver doesn’t intend to hit or kill others and that is why we call them accidents, a true accident is something that is unavoidable, and we could foresee nothing could have been done to change the outcome. This isn’t really often the case with vehicle accidents. We really call them accidents because we have decided as a society that a level of injury and death is acceptable to us in exchange for the convenience of cars. When people die in car accidents, we shrug and say, that’s so sad and we go on and don’t question it much further than that. Sometimes a grieving family will lobby to get an intersection modified to be less dangerous. This often takes years of activism on their part. Although it may be impossible to prevent every single car-caused injury and fatality, car accidents are largely caused by policy decisions and how we interpret and enforce laws. This is especially true in the case of pedestrian and bicyclist fatalities. Sweden, and many other countries have implemented a program called “Vision Zero” that attempts to use policy and infrastructure to eliminate traffic fatalities. Through things like improving streets and intersections, traffic patterns, reducing speed limits, and eliminating dangerous rules meant to unsafely speed traffic along, they have reduced traffic fatalities from 36-60% (depending on the country). The basic premise of the program is that any fatality or injury is unacceptable and through policy and infrastructure the streets can be kept safe. This shows how there are really no (or very, very few) true car “accidents” when changes we can make impact safety so much.

According to the World Health Organization, There are over 1.3 million traffic fatalities a year. Car crashes are the leading cause of death in children in the United States, accounting for 20% of all childhood deaths. Safely maneuvering a 3000 pound vehicle at high speeds is something that takes skill and a certain mindset, but even though there are license requirements and tests, it is not very regulated and there are few consequences for the driver when crashes occur. Furthermore, decisions about roadways and traffic often lean to the side of getting vehicles moved through as swiftly as possible, not so much safety. Cars have become such an ingrained part of our society, hardly anyone loses a license permanently even after multiple traffic violations, arrests or fatalities. In this story, a drug impaired driver who repeatedly backed up and crashed into a building and was tazed in order to arrest him was banned from driving for only 24 hours. Although he may face further consequences when he goes to court, there is nothing stopping him from driving under the influence again. Our culture is so car-centric, that we choose to put dangerous drivers in cars rather than taking away driving privileges for fear that a person suspended from driving would risk his life spiraling out of control by losing access to job and health care. Not being able to drive should not ruin your life and make you unable to fully participate in society. To take away the privilege to drive should just take away the privilege to drive, nothing else. And many, many people do not deserve this privilege. Driving is not intrinsic to society naturally. We went hundreds of thousands of years without motorized vehicles. We have developed society this way.

Driving is a privilege, as compared to walking, which is a fundamental function of human mobility and thus should be protected as a human right. But over the years, walking (and other more low-tech, less impactful and natural alternatives such as biking and utilizing animals) have slowly lost priority and privilege for the sake of the almighty car. The reason pedestrians and cyclists make up around half of car crash fatalities when they aren’t even using cars is due to the infrastructure we have built that prioritized vehicles over all else and pushed out our basic right to walk safely. The fact that I, as a blind person or even just a pedestrian, have to navigate parking lots, stroads (very busy multilane streets with traffic signals and very little to no biking and pedestrian infrastructure), walk streets with no sidewalks, walk miles out of my way so that I may get to the one safe place to cross a highway has pushed our most basic inherent right to mobility to the slimmest margins of society. I often can’t go to a fast food drive-thru, even when the indoor area is closed. I can’t go get a Covid test or a vaccine at certain car only sites. I can’t go to the drive thru 24-hour pharmacy when the main store is closed. I sometimes have gotten honked at and yelled at when I am walking down a street with no sidewalk as if I’m the one who shouldn’t be there. Pedestrians (which is all of us) should have fundamental right of movement, low impact transit methods like bicycles and even horseback should be next, public transit that is for the greater good after that and then people’s individual cars should be dead last. Car infrastructure should be the afterthought to pedestrian right of ways, not the other way around. Every single day, pedestrians make way for cars. This is not the way it should be. People should not come in last place to huge vehicles that can kill people at whim.

Imagine, if you will, a better world…

It really doesn’t have to be like this. We have been bamboozled by car and oil companies. Car companies bought up public transportation that was widely available in the 40s and 50s, only to destroy it so people would need to buy more cars. They lobbied for more highways and roads at the expense of safety, freedom, and the ecology. They led PR campaigns to slowly make walking more and more illegal and looked down upon, like when they convinced municipalities to pass “jaywalking laws” which limited where pedestrians were allowed to simple walk for the first time in human history. They created a world that convinced you that you need to go everywhere in a car that you pay thousands upon thousands of dollars to run and maintain, that adversely affects your health, and that is helping to ruin the planet, all while stripping the rights of the homeless, disabled, and low-income folks who are excluded from car culture.

And as a lifelong nondriver, I get it. I get how hard it is to consider life without a car. Every single day, I have to negotiate this weird outcast roll I have in society as a nondriver. I’ve lost job opportunities, social opportunities, and access to health care because I can’t drive. I spend hours getting places other people can get in 20 minutes. I have to risk my life to be able to get to the places I have to go to. It is very hard to be a nondriver in the status quo. It may be hard for you to imagine how you could possibly do it.

But this is because it has all been set up for cars. These are choices that have been made, not inherent realities. When my kids were little and drew pictures, they would imagine our neighborhood without roads, driveways, cars and alleyways. They would draw gardens and playgrounds and waterslides and little libraries in the road outside our house. In the big parking lots nearby, they would draw skating rinks and bike ramps. As a gardener, I would imagine garden plots and small animals that would mow and improve the soil like chickens and goats. I imagine walkable corner stores and services scattered in every neighborhood. I imagine improved transit that everyone could easily walk to and that would come so frequently, you wouldn’t even need to look at a schedule. I quite enjoy riding transit and meeting and talking to people on transit. If I am in a city where I have to rely on car rides. I feel boxed in and closed off from the world. I imagine that neighbors know each other and help each other out because they actually get out of their vehicle bubble and know each other. Transit could be so integrated that there would not be transit deserts anywhere in any city, and different neighborhoods would have more access to each other. People think public transit is such an awful thing now because it is last priority and left for the people who society treats as last priority. When more people utilize public transit, it improves (unlike when more people are on the road, which just causes more traffic and pollution.) Pedestrian and bicycle infrastructure could be improved. Equipment to haul larger parcels/groceries could be improved. People would get the chance to walk or bike so much more and be in such better shape that our collective public health would improve dramatically, not to mention improved air quality. Intercity freight train lines and processes could be improved, and distribution to small neighborhood stores (rather than door to door delivery) would cut down on transport of goods, as would more manufacturing and growing locally and buying locally. I am not an urban planner, nor am I an expert on things like supply chains and that sort of thing. I know I don’t have all the answers. But I know that as a collective society, we do. We don’t have to always default to the almighty vehicle at all costs, there are other ways. We don’t even see the methods and advantages because we have been swimming in this world where car is king. There is a better way.

And if you are going to play the “disabled” card…

Whenever I bring up this issue, I inevitably get the “what about the disabled?” question. People say we have to have car infrastructure because some disabled people cannot walk or cycle long distances. If you are an actual disable person asking this question…fair enough, and I will get to you in just a second. But for everyone else…I have this to say:

Oh My God, Shut the Fuck Up!

I am rolling my eyes at you SO HARD right now. You are all of the sudden very concerned about the disabled who need close proximity transit, are you? Uh huh. I totally believe you! I know that you are so very concerned about the disabled! So concerned that you park in their spots, you don’t provide curb cuts in your streets, and you kill them when they are pedestrians because you NEED to turn right on red or have that extra space that sidewalks and bike lanes take up. You lobby against accessible pedestrian traffic lights, against accessible buses and taxis, against having to lift one finger to accommodate the disabled. Except when doing so benefits your habits. Here is the truth. Huge chunks of disabled folks can’t drive and need safe pedestrian rights-of-way, accessible traffic signals, good public transportation and community supports to access these things. When you have shown concern and advocated for all of that, come back and talk to me and tell me how concerned you are for the few mobility disabled folks who need door-to-door transit.

Ok, if you are one of those disabled people who needs door-to-door transit. I hear you. You don’t want to be lost in the shuffle of urban planning that would transition us to a walkable, public transit lifestyle and forget you exist, thus leaving you in the dust. Every disabled person gets that because we have all felt it. So the answer here seems to be that we absolutely need to include you in the planning of communities that are not car dependent. There are more ways than just cars to get you where you need to go. This may mean you get funding for a better smaller and eco friendly vehicle, or it may mean you get housing priority in very near to transit and walkable places, or some kind of electric cart or wheelchair enhancements or human assistance (wheelchair accessible rickshaws, anyone?) to get around. Options and solutions for you can be found and that matters. You need to be part of the conversation.

But look at it this way, too. Right now, there are millions left out of the car centric system. Blind people like me, poorer people and people with other disabilities, people who struggle with addiction, younger people, older folks, etc. And this impacts our civil rights and freedoms in countless ways. I am actually Deafblind. Deafblind people are not as able to access safe street crossing as blind people. Many Deafblind people are imprisoned in their houses and can’t go out without help. A world with very limited or no cars and that is set up in accessible ways (tactile markers, digital tags for signage, etc.) would mean that they could walk freely in their communities. I will fight for the mobility disabled who need door to door services. Will you fight for us (and the broader world), too?

Car Culture is a Failed System that Needs to Go

Cars are convenient. I get that. But is some convenience worth all of the failure and destruction that car culture has infiltrated on society? They kill people. They kill the planet. They cost billions and billions of dollars. They waste and ravage our lands. They marginalize entire communities. The isolate people from their communities. Car culture has ruined our communities to such an extent, it does seem hard to imagine how life could work without every individual having a car. But we can improve our communities greatly by rethinking and reprioritizing how we want to live. Improvements in land use, public transit, supply chain transit, community planning, agriculture, and pedestrian and bike infrastructure and safety can make not driving a car every single day to every single thing totally doable, workable and enjoyable.

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.

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.