Car Culture is Killing Us, and We Need to Ban Cars

(Yup, I said it.)

One of my kids, who at 5 told me that the world wasted way too much space on concrete for cars and there should be more playgrounds and waterparks. At 16, he is seen here with his bike near the light rail, which is his preferred way to get around.

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

This shows a satellite map of downtown Kansas City. The red areas, which cover at least a part of nearly every block, show parking. The photo also shows several blocks worth of snarly on and off ramps from a several lane highway in the middle of the area. Read more about this photo in its article “Asphalt City.”

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.”

This photo is from an article about an acquaintance who was killed by a driver who “didn’t see her” and was reported to have been looking at a cell phone while making a left hand turn. He received a ticket for killing her.

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.

There are numerous examples of poor planning that treats pedestrian or bike right of ways as an afterthought. This picture shows a bike lane that is about 18 inches wide and is blocked by a post. Many drivers say bike lanes take up too much space, but ignore the space street parking takes up, or the space their actual car takes up as compared to a biker or pedestrian, or even the amount of people who can fit on a bus or train.

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.

Kommer Jag Att Vara Super Pigg?

I’ve been a bit incognito lately, so I am writing sort of an update to see if I can still write.

This photo is a joke photo that Nik and the kids took after they didn’t make it out of an escape room in time. They are each holding signs that say “Failed! I had no contribution. We Suck. Dumb!” I chose this photo because its of all my favorite people, and also it is how I feel sometimes in my ESRD fog.

Good things are happening even as my health rapidly declines from ESRD. I have become an 85 year old disabled person with very little energy. I plan and ration every trip upstairs or outside. I had a test last week that would probably give most people 1-2 days of downtime, if even that. It really took 2 weeks out of my life. Soon, I will go and get another required vaccination (Shingles) that I was going to get two weeks ago but didn’t because of said test. I know that will make me ill for a few more days. Then, I need to gear up for a 2 day nuclear medicine stress test, and then more vaccines after that. It totally sounds doable for a normal person, but for me, each one means several bad or poor energy days. My body’s requirements to feel “fine” leave little margin for error. It is hard to describe to people the lack of energy, the brain fogginess, the little annoyances like constant itching or headaches that take more energy. Its also very boring to talk about and listen to. So, I’ve pretty much abandoned social media updates for the most part. There is nothing too interesting to say about my state of being. I feel like I’m fading into oblivion.

All these tests and vaccines are part of a looooong preparation for a possible kidney transplant. People heard about this over a year ago and can’t understand why nothing has moved along. There have been delays due to the pandemic, but this is how long things take, too. It is a lot of testing and waiting and testing some more. So far, things have gone well, although there are still a few hoops to jump through.

So, from February to now, I have had my initial physical, 18 viles worth of blood work, a kidney and bladder ultrasound, an EEG, an echocardiogram, a colonoscopy, a mammogram and pap, visits with dietitians and social workers, and a host of various vaccines that adults usually don’t need to get (as well as Covid.) All results have looked good so far, and I keep advancing to the next stage. On July 21st, I was officially put on the UNOS kidney transplant waitlist. I still have a cardio stress test and vaccines to finish up. In addition, my son Avery turns 12 in December, so I really would like to get him vaccinated for Covid as well.

My family, both my nuclear family and my family of origin have been very good to me during this time when I keep getting sicker and am able to contribute less and less. My father and sister have helped me by settling the matter of the house I live in, which has always been a point of stress and up in the air. Not that I thought I would be kicked to the curb, but there was just a lot of uncertainty with it and it was unsettling for me to worry about what would happen to my husband and kids if I died. So we have been able to get our will/estate in order and clarify what happens to the house. I now own the house and Nik and the kids will not have to worry about a place to live if something bad were to happen to me. This is a big relief for me, as well as being able to possibly move in the future if we need a one story house or a cheaper living situation.

More people than I would have ever thought possible have approached me about donating a kidney. This is very humbling. Some, I knew would not pass the screening, but I still am very grateful that they even considered this at all. I am grateful to everyone who has even expressed interest in wanting to learn more about living kidney donation. To have someone willing to donate a kidney to you is a gift that is very hard to wrap your brain around or articulate the feeling about. I don’t think I do it justice.

At this time, I have approached my sister, Lori, about the possibility, and she agreed to be tested. It was very important to me that she didn’t think that she HAD to do it and that she had a choice. I get that this is a huge, massive pain in the ass to put someone through, and it does carry certain risks. I have always been all about bodily autonomy, whether it is about choices to carry a child or try or refuse a medical intervention for disability or donating an organ. I have lived a life of health uncertainty and surgeries and interventions, so I am used to that mindset. I get that it is going to be a bigger deal for others to put themselves purposefully through medical risk. I can’t make those kinds of judgements for someone else. At first, I wasn’t even going to ask my sister, it seems like to much emotional complication. But then, it came down to logistics and practicalities. She has a better chance of being a match, she has a healthy lifestyle, she doesn’t have kids to have to think about. And right in front of me are my kids, one who is only 11 and the other 16. I had always thought I would at least make it until their adulthood. I still needed to try my best to make it as long as I could. I had to go with the smartest choice, but also be ok with the fact that she may not want to do it or not be able to do it. And, honestly, I was/am ok with it.

So, my sister is only in the early stages of her own testing, it is not a go yet. But she is a perfect match. She matches all 6 antigens that they measure. So far, so good. But she still could be disqualified based on the results of upcoming tests. I am cautiously optimistic. Its a weird process. Right now I am filling out an application to get help to pay for her travel costs and that sort of thing. My insurance pays most of her medical costs, but there are a lot of miscellaneous expenses involved in this. Its complex and my brain gets foggy and I can’t think of words or apparently have the most intellectually stimulating conversations anymore. I don’t even feel like the right words are coming to me now, when writing about it. Just the basic facts is about what I can accomplish here.

Just the basics is what my life has been stripped down to. To get up and exercise and eat right and try to pick up after myself and do a little bit of homeschooling with my kids (they are fairly independent right now, and I do utilize the older kids to sub for me when I am off to doctor stuff for the younger one.) Nik does all the cooking. Everyone pitches in on the cleaning and I am very well aware that I have started to do less. Maybe I clean my bathroom sometimes, I do gardening in short bursts. My guide dog is bored so I try to still take her on walks. I used to be able to walk miles a day, now I go a mile in 30 minutes and I am pretty much done. I exercise always doing the modifications in Fitness+ videos and I even sometimes have to make modifications to the modifications. But my goal is to not lose it altogether. You know that saying “The more you know, the more you know?” My current motto is “The more you do, the more you do.” When an opportunity presents, I try to say yes. Even though I know it may mean I do some modified version of yes. Even when I am a high risk person living in a pandemic. Moving in some fashion is always better than staying still. It will never be the perfect time or feeling or way to move.

The best case scenario for me would be that my sister passes the rest of her assessments and I get a new kidney sometime in the next 6 months or so, then I will probably have to go another 6 months to recover and manage rejection. Then maybe things look up for me? I get some energy back, I feel better, my brain fog clears up, I stop itching all the time? But I also have to be prepared for my sister not making it through and having to start from scratch or wait for a cadaver donor and that will likely mean starting dialysis in the next 6 months. Those are two very different outlooks, but its all I can do. Long ago have I let go the false notion of free will. It will be what it will be.

But the title of this post gives me hope. It means “Will I be super spry?” in Swedish, which I am hanging on to right now. It refers to something Prince Daniel of Sweden said on TV recently. He had a kidney transplant about 12 years ago with a kidney from his father and he said that almost immediately after, his brain cleared up, his body felt good and he kept saying he was “super pigg” and since my Swedish knowledge is extremely basic, I asked Nik why he kept saying he was super pigg? I thought that sounded funny. Nik explained that he meant he was highly energetic, or very spry and alert. So now we talk about the time when maybe I will be “super pigg” again. Maybe I will get a “super pigg” t-shirt.

So when you are dealing with something like this that is hard now, and hopefully has a good chance of getting better but also could just as easily get worse or even be the end of you, it is hard to frame your day-to-day. Life is happening NOW, no matter what. You can’t push pause, even in a pandemic. My kids are gettin older, Nik is getting older, seasons are coming and going. You can’t put things on hold in hopes that it will be better someday. You still have to participate as much as you can. You also have to give yourself some grace and know that you just simply will not be able to do all that you want to do. You have to come up with different ways of living and balancing things, while still hanging on to some hope. I am trying to come up with different ways to be social with people, and reach out and give…but I struggle with this because I mostly feel like a dud with nothing interesting to say. I’m trying to resist the urge to just put everything on hold and find new ways to keep moving forward. I thought I would try to write more, even though my brain is full of cobwebs. I’ve thought about reaching out to penpals (email pals, actually) instead of doing the social media thing which I just feel unmotivated to do. I thought of doing something on Youtube, just something simple like putting up videos on how to use different blindness hacks and things that might help people. Maybe I read more books? I don’ t know. Got any ideas for me? What have you done when your life has had to slow way down for the foreseeable future? How have you balanced grace for what you can’t do with pushing yourself to do just a little more? How to stay just “lite pigg?”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Short Film “Feeling Through” Feels Racist, Ablist, and Tired

As a Deafblind woman, I was excited to hear the buzz that was afloat about an Oscar nominated film short called “Feeling Through.” It stars Robert Tarango, an actual Deafblind man playing a Deafblind character. There has almost never been a movie with a Deafblind character, and had there EVER been a movie starring a Deafblind actor? I was hopeful that finally, my small unique community of Deafblind people would finally get a positive portrayal on film.

It took me several weeks to see the movie after its release. There was no audio described or transcript/screenplay made public for Deafblind people to be able to access the movie until several in the community complained. Then, a transcript finally came out that had several typos and seemed rushed. Finally, I saw the movie via a combination of watching the audio described and captioned version with some assistance until I could finally read the transcript. When I saw it, I was horrified and crestfallen. It was a terrible movie, not only in how it portrays the Deafblind man, but in its portrayal of the protagonist, Tareek, a houseless black teen played by Steven Prescod. (Note: Although the transcript identified Prescod’s race as black, it did not identify the race of Taranto. Sighted assistants have reported to me that he appears white.)  Although I have nothing bad to say about these two actors and was happy that a Deafblind man was playing a Deafblind part, this was the only good thing I could rejoice about this movie.

Taranto’s character, Artie, was like very few Deafblind people I had ever met and didn’t seem to represent us at all. Deafblind people are very diverse, and we have a million ways of doing things, so I did not expect that Artie would do everything exactly like me. But since there are basically no representations in media of Deafblind people, I was hoping that Artie would be a positive one. I have since learned that Artie was based on a real character named Artemio who immigrated to the U.S. and did not know braille. Although I do understand that there are Deafblind people who unfortunately slip through the cracks and do not have the same access to resources an education as most of us do, I felt like this fictionalized depiction of Artie was a missed opportunity to tell THAT compelling story of a resourceful person through his lens than the story that was told. To me, fictional Artie seemed to be a hapless and selfish character who bumbled through his tasks by nabbing and taking advantage of whatever passerby might come along, and then turning the entire responsibility of himself over to that random stranger. Although I can’t speak for all Deafblind people ever, that is really not the way the majority of us go through life.

I work in assistive technology, and what I noticed most about the film was that although Tareek was equipped with a smart phone, Artie had been completely and unrealistically stripped of any technology that disabled people depend on to access their world. In the story, the houseless Tareek is looking for a place to crash by texting his friends, when he runs into Artie, who holds out a sign asking for help. Many deafblind people do use communication signs when interacting with a public who largely doesn’t know how to communicate with us. But most of the time, we might only ask for a simple tap to indicate when a light has changed, or we may ask for a small amount of guidance that would take someone only a few minutes out of their day. Artie asks for help finding a bus stop which is fine, but then proceeds to: assume that Tareek will sit with him, tell him the bus schedule, go and get him water and snacks, handle the payment for the snacks by handing him his entire wallet, get back to the bus stop, wait with him for over an hour, wake him up when he falls asleep, tell him when the bus comes, speak to the driver for him, and generally take total responsibility for him.  Deafblind people have many methods of doing things, but I guarantee, the vast majority of us would not do it the way that Artie does it. 

Deafblind people can and do use smart phones, usually by connecting them to a Bluetooth digital braille display. Most of the same apps that are available to sighted people are available to us. We can get directions with navigation apps, read bus schedules, and call an Uber with them. But they are also invaluable to create connections between us and the sighted, hearing world. We can use our smart phones as communication devices, they can tell us what dollar bills we are holding, they can help us to flag down a particular bus, and show the bus driver where we want to go and even watch for our stop with them. But Artie has been stripped of basically all the tools that Deafblind people use for independence and was only left with a pen and paper and printing on Tareek’s palm. These are legitimate low-tech solutions that people use in a pinch, but not routinely in the middle of the night with a total stranger to get home. There are national programs that provide this equipment to most Deafblind folks, but sometimes Deafblind people don’t have access to tools and the training to use them. However, when representing one of the only deafblind characters in all of popular culture, when most of the public doesn’t understand how we do anything, this portrayal of a very unrealistic deafblind person does more harm than good.

(This photo shows a man in jogging clothes with a guide dog. He has his hands on a braille display which is held by a strap around his neck. Digital braille devices connect to smart phones and are key tool to connect blind and Deafblind people to the world.)

But the reason it was necessary to show Artie rather hapless and without tools is actually the bigger problem in this film. Artie was not so much a character as he was used as a plot device for Tareek’s redemption. The story is through the eyes of the down-on-his-luck Tareek, who takes advantage of Artie by robbing him on the sly when Artie hands over his wallet to him. I found this portrayal of a black criminal minded youth to be very troublesome and concerning. Aren’t we ever going to move past this trope of black thug youth on the streets? Can’t we do better? And the plot of the movie is the same old tired disability porn trope where a disabled person is used as a prop to inspire a nondisabled person. In Feeling Through, this is especially cringy as a houseless black teenager is pitted against a Deafblind man in some sort of Oppression Olympics. It is not the job of disabled people to inspire better behavior in others. It is really not the job of black youth to play criminals needing redemption through encountering another underrepresented person who is supposed to be “worse off” than themselves.

Activist and Attorney, Haben Girma, who is black and Deafblind, had similar feelings about this film. “Racism permeates the entire project, from failing to racially identify white characters in the transcript to portraying Black boys as criminals.” She told me that she was approached in 2018 to help fundraise for it, but that based on the descriptions and clips she was given, she was very concerned about the message that it gave to underrepresented youth. “America does not need another film portraying a black person taking advantage of a disabled man.” Actress Ashlea Hayes, who is also deafblind and black, walked away from the film with mixed feelings. She saw Tareek as mostly “gentle, kind, and understanding” and appreciated that he wasn’t a “white savior” character. But she said “The DeafBlind character did not portray DeafBlind people appropriately. The average person watch this film would assume that DeafBlind people are not independent, and capable.”

When I started watching the film, I was hopeful that maybe we would see some real interaction between Artie and Tareek. Maybe we could get to know something about their lives and how they accomplished their goals, maybe they could even help each other out (Could Artie have offered Tareek some money or maybe even a place to stay?) But instead, I was appalled to see a Deafblind man who didn’t know where the bus station was, fell asleep in the wee hours of night at a bus stop, and gets ripped off unawares by a black kid. Then, I believe I was supposed to feel warm and fuzzy when Tareek somewhat redeems himself in the end, but I didn’t. I just felt like racism and ablism, rinse, repeat. Same thing, different day. This matters because when the general public does not tend to know anything about Deafblind people, the very few media representations we get are very important. A negative or misleading depiction can cause us more discrimination and lost opportunities in employment, education, and community. If I go in for a job interview and the employer thinks of poor Artie tripping over construction cones and getting robbed without even knowing it, I have and uphilll battle to convince him that I am a responsible, aware and competent person who will not need constant caregiving just to walk down to the coffee stand.

I was hoping this film–which until pressured, didn’t bother to make itself accessible to deafblind folks–would wither and die. But instead, it has been nominated for an Oscar. How original. A nondisabled person’s exploitation of disabled people as prop for the appropriate amount of heartstring tugs is not a new thing. The 2019 documentary, titled “Code of the Freaks,” calls out tired disability tropes seen in movies by playing a montage of nondisabled actors winning an Academy Award for playing disabled people in movies which largely are inspirational porn-themed tearjerkers. Feeling Through does right by hiring a disabled actor for a disabled part, but that isn’t enough. We need disabled screenwriters, directors and producers who will make realistic films about our lives from our point of view and our reality. Crip Camp, a nominee in the documentary category, is a step in the right direction. Somehow, Feeling Through managed to sneak past the “piercing gaze” of those who are trying to make the Oscars move in a more authentic and diverse direction. My hope is that the Academy will be savvy enough to see it for what it is and not vote for it to win this category. There are much more fascinating stories out there about underrepresented communities than these same tired white, nondisabled versions of what they think our lives should be.   

A Few Publishing Updates

There are a couple of new (and not so terribly new) articles out there on the WWW from me. Check them out:

First, there is an article I wrote a while back in regards to my partner, Nik’s trip to demonstrate the product that teaches kids with low vision and blindness coding, called Code Jumper, in Qatar. This was printed in the magazine Nafath, which is a publication of Mada, a digital access organization in Qatar.

Code Jumper: Paving the Way for Blind Students in STEM Fields (You may have to scroll to page 14.)

Also, in Medium, I have published a few articles.

How Lisa Shulman Taught Me to be a Master of Time

This is about my transition to kidney patient and how I continue to learn lessons from my late high school friend, Lisa.

Can I Explain Insidiousness to my Congressperson in 5 Minutes or Less?

This article illustrates my struggle of explaining the pervasiveness of oppressive and discriminatory aspects of digital accessibility, which is very hard for the non disabled to wrap their heads around in the first place.

In Defense of Dr. Google

I explain the history of my kidney disease and how I have learned (and am still learning) to be a strong and informed advocate for myself about my health.

That’s what has been up with my writing for the last few months. I am still working on more things to come.

Deafblindness in the New Yorker

I have been interviewed by several media outlets about Deafblindness and the Coronavirus in the last few weeks, and I am quoted a few times in this one from the New Yorker.

Who is “Worthy”? DeafBlind People Feel that Doctors Won’t Save them from the Coronavirus

I find myself wondering what the purpose and interest is in these articles. But I think it is like everything in our lives. People don’t realize Deafblind people exist. I can’t tell you how many times I tell people that I am Deafblind and that is why I need X accommodation and they are like… struck dead in their tracks in disbelief that people really exist in the world and have lives and jobs and kids, etc. while being Deafblind. So, hopefully these articles possibly make people stop and think about considering us in the decisions they make when they develop policies for this situation.

Also the most frightening aspect of this for all disabled people is this notion of eugenics oriented triage and the risk that we will not get access to the same health care as others. For Deafblind people, the problem of communicating in a health care setting where people may be unwilling to allow for interpreters, communication devices, touch-based communication and other methods leads to the fear that we will be cast aside and given no human consideration whatsoever. So hopefully these articles will allow for some creativity and imagination when it comes to our community and the realization (yes, I have to say this) that we are actually worthy of health care.

Yet Another Blog

I have too many blogs, and now I have another one. Let’s see how this goes!

But first, a note on the neglected blogs.

The homeschooling blog has become a little more difficult because my kids are not really interested in my blogging  about their day to day, and I think that is fair.  I have my own thoughts I want to write about homeschooling, but it is difficult to do so without sharing kid experiences. I will think more about this. So, I won’t shut it down yet.

Skate Therapy did not go as planned. I was having such boot problems and injury problems that I had to stop. At least for now. I am pretty protective of my ability to walk, as it is so difficult to not walk when blind and not drive. So, I may be on the overly cautious side. I have not stopped exercising for both physical and mental health, but I just do boring stuff for about 30 minutes a day and there is not much there to blog about. It happens most days, I feel better when it happens, the end.

My newest blog is called Deafblind Urban Farm, which is a little tongue-in-cheek as I have such a small “urban farm.” I have become interested in all the ways people choose to have a sustainable lifestyle like going off-grid, gardening, homesteading, etc. I think changing the way we live is going to be necessary for the future. Many of us are far from being prepared or set up to live sustainably. This most especially includes disabled people. This most especially includes me. Many of us are very tied to our technology and our city creature comforts, that for disabled people actually are more survival strategies than luxuries or comforts to us. But I want to see where we fit in to that world that is coming up ahead of us. How can we be more sustainable while keeping our tech that we need to survive? How do we prevent being left behind?

So, that is where that is. I hope you enjoy the new blog. Since I have 0 skills in this area and am on a gigantic learning curve, I hope you won’t laugh too hard at my many, many planned failures and mistakes that will come. I am still writing occasionally on disability tech and civil rights for other publications, so I will continue to use this site as a collection center for those things.

I’m So Vain, I Probably Think this Post is About Me

…but it’s not. It’s actually about disability activist, Norman Kunc. And disabled people, and women, and poor people, and you, and everybody.

Being blind, I’m not a big instagram fan, but I recently started a project on instagram called #picaday2020. Its one of those stupid things where you take a picture of yourself everyday and post it. I already hate it. Why? The requirement is that I have to be in the picture. First of all, this is hard because there are no photographers in  my house. Not me, not my blind husband, not my kids who, despite being the ones that made me think about this by commenting that there are hardly any pictures of me, aren’t really in to taking lovely, well-thought out photos of me everyday.

I hate, Hate, HATE the thought of myself in pictures. I know what I look like. I am nearing 50 years old, I am middle aged, overweight and have funky messed-up eyes and a puffy broke out face from kidney disease medications. My uniform of choice is yoga pants and a T-shirt, no make-up, straight hair stuck in maybe some kind of random hair thingy. If I think too hard about it (which I try to avoid) I am kind of grossed out by myself.

Nationally-known disability rights advocate, Norman Kunc speaking at an event.

But then I think of something Norman Kunc, who has cerebral palsy,  once said when I met him years ago at the University of Kansas. I am severely paraphrasing here, but he said something about how when he hears his caregivers (usually women) talking negatively about their own appearance or weight or clothing or hair. He thought, I wonder what they think of me and what I look like when they think this about themselves? How can they really treat disabled people whose appearance is not typical as worthy and equals when they are so critical of their own appearance?

It made me think. There is something that we don’t talk about much in the disability community or in any community, even though I think it severely affects how we have been treated. Beauty-bias. The appearance of us. Of course this bias goes beyond disability and cross-sections race, gender, class, etc. But I think it especially affects the disabled.

The disabled were disproportionately affected by the so-called Ugly-laws, where people deemed unpleasant to look at could be arrested off the streets and put into institutions and almshouses indefinitely. It was illegal to be ugly, deformed or otherwise unpleasant in appearance in public for many decades. One of the last places to still have and ugly law (till 1974- my lifetime) was in a place where I grew up, Omaha, Nebraska.

I first encountered the consequences of beauty bias when I was growing up there. I had one of those mothers who had perfect hair, perfect nails, a perfect wardrobe, and who would rarely go to the mailbox without being appropriately made-up. When I was around middle school age, my hair started a phase of growing into frizzy kinkyness. My mother hated it, and would make me chemically straighten my hair and wrap it in old fashioned curlers every night before bed. I would sleep in them all night long. Once, my mother and sister were going to go on a trip to visit my glamourous aunt in Arizona. I couldn’t go, she said, because there was no way to take all my hair nomenclature on the trip. “I’m sorry,” she said, “But your hair is kind of like a handicap.”

I am on the far right next to my sister and mother. This picture was taken sometime in the midst of the Contact Lens/Frizzy Hair Wars

Even then I knew that was crazy, but then I was less sure about  my actual “handicap.” I was in the midst of the years long Contact Lens Wars. I had very thick, funny looking glasses. My mother said they scared people, and so she wanted me to wear contacts simultaneously with more normal looking glasses. I had to wear two different pair for this to work. But I did look like a more regular glasses-wearing person. I never adapted well to contacts even after multiple tries. They were very painful and caused red rings around my pupils. But, the message was clear. My pain, how well I could see or function, how much money it costed, or trouble it caused paled in comparison to “looking normal.” This was the message I learned and did not question.

Once, in college, I went to a frat party with my “hot” friend. I had recently had eye surgery and I think my eye was extra wonky that day. Some frat guys we didn’t know shouted, “Hey Tracy Lords! Why didja have to bring Hatchet Face?” I did not understand the reference until I watched the zany John Waters movie “Crybaby.” Oh, I guess I am Hatchet Face, the ugly one with the screwed up face.  But I liked Hatchet Face (played awesomely by Kim McGuire) in that movie. I decided to make her my own. Hatchet Face had style and she did not give a fuck. And she had cool friends who also did not give a fuck. She and the overweight Ricki Lake were besties with the beautiful Johnny Depp and the hot blond Tracy Lords. I can run with that crowd. I can have that style. I can own Hatchet Face.

The cast of Crybaby.

So, I struck out on what I called the “Celine Dion” philosophy. My dad once said Celine Dion is unattractive, but does the best with what she has. (I don’t think she is unattractive, but I got his point.) So, I was going to do my best with what I had. I had great hair that I dyed different colors (I had learned to work with the frizz by then in more realistic ways than my mom had.)  I worked out and had a decent body. I had lots of cute clothes, jewelry and make-up. I abandon all contacts and glasses, but I replaced them with a cute guide dog. I still had funky eyes that didn’t focus quite right, with too many red scars in them from surgeries, but I was doing it all with what I had. It was fun.

Me sometime in my 20s when I was all about overcompensating and being cute. (Being in my 20s certainly helped with that.)

But then once I applied for a job. Business suit, professional heals, hair, make-up, etc. And I heard later from a coworker with connections that I didn’t get the job because of my bloodshot eyes. “He thought you were drunk or on drugs.” my coworker said, ” and when I explained about your eyes he said it didn’t matter, because other people would think you were on drugs so there was no way you could work there.” I wondered how many other jobs and opportunities I had lost because of this. Something I could do nothing about.

Over time, I started to realize how repulsed people are by the differences in appearance caused by disability. Once a person gave me a ride to work and saw my boss through the window, a man with cerebral palsy who uses a wheelchair. He went off on how gross the guy was and how it made him sick to look at him. Why? I asked. He is just an average looking guy in average clothes. What is the big deal? But LOOK HOW HE MOVES! he said, referring to his spasticity.

Just a few weeks ago, my husband and I went to a parent’s night event at my son’s school. As we sat down at those picnic style cafeteria tables, I said a friendly “hello” to the parents sitting across the table. The man said to the women, “I can’t eat here” and the whole family got up and moved down to the next table. My husband has what Independent Living pioneer Ed Roberts would probably call “buggered up” eyes. They are atrophied and it looks like they are shut or that he doesn’t have eyes. He has a large scar on his chin from the same motorcycle accident that blinded him, and some minor paralysis in his face that makes his smile look a little odd. Whatever Hatchet Face drunk eye look I have, he is often treated much worse than me by strangers. When we are together, we seem to be more than some people can take.

My beloved husband, Nik, who I find gorgeous in his own way. (Also pictures is our then 1 year old son and 6 year old son.)

Disabled people often have physical aspects that are not typical and beyond their control. Beyond whatever actual and real discrimination that all disabled people face, those with atypical appearances face much more bias and derision. Sometimes, when I hear about a blind person who has had considerable success, I make a guess that they are typical looking to good looking, and I am almost always right. Some blind people do not have atypical features and can be very typically attractive. And quite frankly, they can often be rewarded with better treatment, more opportunities and less bias.

So, we ask ourselves, what is our responsibility as blind people to make others comfortable with our appearance? Obviously, appearance means something and I used to cringe more than I do now when I met a blind person who had no clue as to how to do their hair or wear matching clothes (which has more to do with low expectations and lack of opportunity than appearance at its core.) There is the Stevie Wonder sun glasses look that was a hack many blind people used in the ugly law days. (Some blind people also wear sun glasses because they are very sensitive to light.) There are prosthetic eyes, a version of which can be worn even if you have eyes. I have had many friends that wear these hand-painted scleral eye prosthetics. There is plastic surgery. All these options can be very expensive, have health risks and can affect functioning.

At what point should people be expected to accept us? Sure, have your second look, your double take or whatever, but then…how hard is it to just get over it?

In about my 30s, other elements started to come into play in my decisions about how far I was going to go to please other people with my appearance. My chronic kidney disease became more of a thing. I had to ration my energy levels. I had kids, I worked multiple jobs. Taking a shower became a thing I had to budget my energy for. Certain things, like nail polish and cute clothes, went by the wayside. For a time, I had babies in diapers and a job cleaning urine and ostomy bags. I was a mess all the time. My motto became “neat and clean. All I can promise is neat and clean.” I bought a bunch of Hanes T-shirts and scrub pants. I showered daily, I changed clothes when they were soiled, multiple times a day. That was it.

Here I am in my caregiving role with my twins in my These Hanes T-shirts WILL BE CLEAN days.

And that remains to this day. I still like to dress up and wear jewelry and make up on occasion. I still understand and appreciate that other people have fun with it. But I have been fortunate to be able to arrange my life to work mostly from home. This allows me to be as productive as possible and free to do the things that I want to accomplish. But it also means that I am not going to spend two hours flat ironing my hair and doing my nails to just walk upstairs to the computer. With kidney disease being much more of a factor than blindness at this point, I have to ration my energy and that means that I cannot afford a large budget of energy for vanity.

And I know what this means in this era where everyone is online and looks fabulous. There has been a sort of beauty inflation going on. Now you don’t just paint your nails, you decorate them with works of art. Now you can’t just throw on some sandals unless you’ve had a professional pedicure. Now you don’t just pluck a stray eyebrow hair, you get them threaded. Now you don’t just dye your hair some natural color, you dye it a rainbow of colors regularly. Now Kim Kardashian gets her hairline lasered and everyone has breast implants, butt implants and wears Spanx. Now not just the odd celebrity has “work done” everyone is expected to. Now new boxes of clothes come once a month and you can’t wear anything twice.

But disabled people largely get left behind. They (along with other marginalized groups) cannot afford to spend X amount of hours in the mani/pedi chair and X amount of dollars on the newest 5 second fashion. Many cannot get “work done” or get things like prosthetic eyes due to health or financial barriers. My friend who is quadriplegic and sometimes does not have enough care hours available to shave and cut his hair, often says how much better he is treated by medical staff, caregivers and others when he is clean-shaven and with cut hair. Hard decisions about prioritizing energy and time can impact personal appearance, but instead people often look upon grooming differences as a lack of competence or a character flaw.

Function takes precedence over form when you are constantly trying to keep up your function in a world not made for you. I used to ride the bus crumpled up against strangers and then walk over a mile to work in the Oregon rain regularly. When I got to work, I was the one who looked like a drown rat in heavy boots while everyone else stepped fresh out of their cars. I did not have room or the ability to carry a whole new wardrobe to change into when I was already carrying a ton of adaptive equipment. Even when I tried my best, I still felt left behind in the world of appearance.

Mostly, I don’t care too much about all of this. I am much more likely to get pissed off when I see one of my friends getting treated poorly because of the way they look. But I would like to center for others and myself this idea that people have dignity and self-worth no matter what they look like or how they choose to decorate themselves. I do not want anyone to feel they have to apologize for not measuring up to some appearance standard. As a small statement of that, I wanted to put myself out there on instagram and not apologize for my own appearance anymore.

My life is really good right now. I have many blessings. And I wanted to somehow share those and appreciate them myself while also being bold enough to be the self accepting person that Norman Kunc expects and deserves. I am a middle aged woman who is deafblind and has kidney disease. My eyes are scarred with surgeries and my face is puffy from kidney medication. I’m a bit fat. I often can be found in yoga pants. But I am clean and neat. And I am being as productive as I can, while enjoying all the good things my life has to offer. This is what I look like.

This is the picture that inspired the project. I am HAPPY here. I have my kid and my dog and my husband and its Christmas and we have our house and presents and good food! But I can’t show it to anyone because I maybe look FAT!

In my instagram pictures, I have tried to highlight every day a “blessing” in my life. One day it was a movie with the kids, the next it was braille and the knowledge and equipment I am so lucky to have access to, another day it was my guide dogs, another it was that I still love to exercise and do things like yoga, and another it was friendships. I will try to improve on the photography but I cannot promise anything. But 25 years ago Norman Kunc told me I was being a hypocrite about my insecurity over my appearance, and I am going to finally stop that right now.

October Odds and Ends

October was an extremely busy month. I’m just finally catching my breath. We started with a teen retreat, then my twins met their biological father for the first time (he found us via DNA testing in May and we had corresponded since then. They have known many of their donor siblings for years, but meeting their “third dad” has been a bit of–a positive, but still–a whirlwind.) We had NFB convention presentations, other miscellaneous presentations, my family visits, Halloween events, I got a new Braille Display to get used to, My partner, Niklas Petersson, went to Qatar at the last minute for a week, I was sick with a respiratory infection for about three weeks, and now I want the most boring November ever.

But backtracking, I had a couple of published things I wanted to post here.

First, I did an interview with the disability activist and blogger Mariah Hudson Nichols. I am really enjoying her blog. Check out my interview and stick around for the rest of her blog.

Disabled Moms Interview Project: Lisa Ferris, Deafblind Mom

Second, I had a column published in the Rooted in Rights blog. I have worked with them before, but I learned a lesson here. I wrote this up several months ago and sent Emily Ladau a draft to see if she was interested in it at all. She said yes, and that she would like to print it in October for Disability Employment Month. …And then, I promptly forgot about it. I had meant to go through an editing process with her and shape it up a little, but lo-and-behold, one day it was published as is. I learned in my freelance career that maybe it is best to NOT turn in an article before being pretty sure that it is edited to my satisfaction. That is my mistake, and the typos are mine.

“Essential Functions” on Job Postings Creates Barriers for Employees and Employers Alike

Third, Nik had a story in Al Jazeera about his trip to Qatar where he demo-ed educational equipment at the Qitcom convention. The story is in Arabic, but I will try to put a link of it through google translate for you (which makes it sound odd, but better than nothing if like me, your Arabic isn’t up to snuff.) I hope to write about his trip (kind of from his point of view, since he is not a writer) soon. It was fascinating even from my perspective as a bystander.

Nik’s Al Jazeera Article (Arabic)

Nik’s Al Jazeera Article (Google Translate URL)

Here is to a nice and slow, uneventful next few weeks!