In this assignment, I was supposed to play around with the “hermit crab” genre of creative nonfiction, where an essay is hidden in a different style or mode of media. We also played with the idea of parody in nonfiction, which is a bit tricky as it gets pretty grey where the nonfiction stops and fiction starts. This is a play off of a real Facebook group.
Financing College Group
Private Group 143.7K members
October 2, 2022 3:46pm
Hi Everyone! New to the group and don’t know where to begin. I have a senior in a Dual Enrollment Program. I just filled out the FAFSA and we baaaaarely squeaked by qualifying for a Pell Grant. My kid is kind of a high achiever and wants to go to Yale (heh), which I doubt is in the cards, but I’m trying to be open minded. I think an in-state school is probably more likely what we can handle. His parents (me, stepdad and dad) are all disabled, so also looking for any free or low-cost advice or specific programs that might help him out. It is all quite overwhelming–Any help is appreciated!
👍🏼❤️45 Comments 856
I’m so happy that you are here!!!!!!! 😍😀😄 is SO SO SO hard to figure all this out. 🥲☹️But we gotta do the best for our kids, don’t we? 🧒🏻👦 Don’t have any advice, but just wanted to say Hang in there! You’ve GOT this!!!!!!❤️❤️❤️
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Well, my advice would be to take your EFC and plug it into the NPC of each U and see what COA comes up. Remember, if you apply ED or EA, there are a lot more FAO than if you do RD. Have you done the CSS, yet? You need to have that for EC schools. Also, if your son has a lot of DE credits, or does he have any AP or IB? What is his GPA and SAT? What about the CLEP? All of these can increase or decrease the NT dramatically.
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I KNOW what you MEAN about it being SO overwhelming. My daughter has a 5.6 weighted GPA from a private prep school. Editor of the school paper, varsity field hockey, first in her class. You know, all the usuals. And I had no idea what I was going to do when she got into both Harvard, Princeton AND Yale! I was so scared and just devastated that I wouldn’t be able to afford to send her to her dream school! But she was a legacy at Yale and so her grandparents were so proud of her that they just offered to foot the bill. Do you have any rich grandparents? That is the way to do it, if you can! Now if she can JUST find a good boyfriend there, she will be set. She just doesn’t understand the importance of Yale marriage prospects. She is so frustrating!!!
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Wait? Disabled people can have kids? And they are allowed to go to college? No way. I bet they give you guys a free ride. Great. Another “identity group” that is going to steal scholarship money from my straight, white, cisgender, able-bodied son. No room for Real Americans in college anymore!!!
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My kid just filled out the FAFSA, too. And she kept asking me all these questions about my income. I didn’t understand why, until I figured it out suddenly. Let me get this straight—is this correct? These colleges expect me to PAY for her college? Like am I required to do this? I mean, she is 18 this summer. I thought I was done? What if I just say no? Won’t someone else pay for her then?
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Edward Jones, Financial Planner
What you need to do is divert any savings assets to a Roth IRA, then convert any savings your son has to an ABLE Account and divest any stocks and bonds to liquify assets to put into a 529 and then pick a home improvement project and get busy. You can also refinance your mortgage to a higher interest rate and slow payments over time to show that you have more debt. I am happy to help you plan for your son’s future so that college costs (and taxes!) will be minimal. Feel free to give me a call at (503) 555-1234 and ask for Ed!
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Its all a scam anyway. The highly competitive schools only pick rich, legacy kids who’ve paid a college admissions wizard a million dollars to write their essay for them and jack up their SATs. Your kid is never going to get in unless you buy them a new science wing. Sure, they will string you along for a while, they will act like they want your kid, but even that is a scam to make them look more competitive! Then they will defer your kid just to see who is ready to pony up their exorbitantly jacked up tuition prices and leave him hanging until all other offers have dried up, just because he thinks he has a chance to get that Ivy League shine. But face it. Your kid will end up over educated and in debt working as a barista when he is 40. Sucks, but true.
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I know, right?! It’s so tough! I just don’t know what to do! I want my kid to be able to go to college so much, but I am a single mom and I just got divorced from my 3rd husband, and well…I am living with this other guy who is kind of my boyfriend but not really, or at least only until I get a new job because I just got fired from the last one. I have to take care of my mother, too, who has emphysema, but she still constantly smokes no matter what I tell her. I’d move in with her, but the smoke is SO BAD, and Craig…my boyfriend or the guy I currently live with, or whatever—he doesn’t want me to smell like smoke and he already hates my kid for smoking weed in the house all the time. I mean, I could move in with my mom and tell him to go to hell but you know, every once in a while I get lonely and well, he is good in bed lololol. So, I just don’t know what to do when I am out of work and no place to live but it would be nice if a fairy godmother would come down and sprinkle a little ambition on my son so he would go off to college and then maybe eventually I could live with him while I recover from this current guy. But Craig is SO handsome the way he rolls over in the middle of the night sometimes for a little piece of me and he—well, anyway. Will colleges pay for a kid who gets TANF?
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Well, thanks everybody. This has been…helpful and is….uh, a lot to think about. If anything, you all have clarified that this is a convoluted mess, so fun year, I guess?
I recently took a class on creative nonfiction writing and decided to post these quick, short weekly assignments in a series here. Assignment #1 was just a stream of consciousness assignment where you pick a mundane thing and write as much detail as you can about it in 20 minutes. I did spell check these and fix typos but did nothing else to edit them.
Today I walked with my husband to a client’s house to look for a better route that wasn’t marred with construction. It was about 1.5 miles away. After leaving him off there, I walked with my guide dog back home. I decided to see if I could get through going the shortest way, which was a ton of construction in weeks past, and my blind husband has been both treated wonderfully by workers on this weekly walk and has been yelled at. I decided to be brave and see if I could get through.
My guide dog and I walked down the “stroad” which is the worst kind of street. Its loud, windy, stinky and busy with cars. The sidewalk was fine, but it smelled of tar and gasoline and the wind was cold today. At least it was not raining. As we walked, I get all kinds of information from my guide dog, Marra. If there is someone walking behind us, I can feel her looking back. The harness handle I hold on to will bend to the left a bit as she strains to see what is coming. If a dog or something incredibly interesting is up ahead, she has a bit more spring in her step and she has her head held high, which makes the harness handle rise a bit. If she is looking at me to get her next instruction to try to tell me something is in the way, I can feel the harness handle tilt up and to the right towards me.
Marra loves to find things, so she knows what I am looking for when I tell her to find a button. Of course the beg button on the crosswalk is 50 miles from the place where I need to line myself up from traffic and cross. This means I cannot stand near it with my hand on it and wait for the button to vibrate to tell me when the “walk sign” is lit up. I will have to wing it a bit and use what hearing I have. I listen to traffic patterns and am careful not to mistake a left turn car for a parallel car that indicates when I can go. I always give Marra the command to go forward at street crossings, but she is allowed to over ride me. Mostly, when I cross streets, I use The Force. Where I just go out when all the indications say I should go, light, traffic patterns, guide dog approval, and will the cars to stop for me with a death stare. I imagine waving my hand. “You WILL let the blind lady cross the street.” By the way, SFU, you know where drivers are so polite and kind and always wait for me? Vancouver, BC, Canada. That is why I like to go there and stay at the YWCA 2 blocks down the street from the skytrain. Lots of safe, free, accessible travel.
When we crossed onto the block where the previous offending construction had been, we walked briskly for a bit and then I could feel some apprehension in my dog. Something was up. The questions was…could I get around it? All of the sudden she stops. I put a foot in front of me and there is a barricade. I tell her to “find the way” and she takes me over to the curb and steps me off to my right. I think we will just hug the left and walk into the street for a bit to get past this. This street is moderately busy, much better than the stroad I just turned off from. If construction is going on, cars should slow down and watch out. I could hear them passing slowly to my right, one at a time.
But it was a no go. A hand from nowhere grabbed me. I said “please stop and listen to me so we can work this out.” I tell that I am blind but also don’t hear well. I say that I know there is construction, but I can walk around it. If they want, they can let me grab their elbow and I can follow them. I can smell this guy, I am 95% sure he is a construction dude that just want’s me quickly out of the way. I’m hoping we can make this quick and painless and he won’t freak out. I show him how to say yes or no to me with his fist in my palm. I say, can you walk me through it? A rough, gloved fist shakes no in my hand. Ugh. I know they are letting cars through, why are pedestrians less important than cars? “Do I have to turn around?” His gloved hand, wadding into a tight fist, indicates, Yes. I can tell he is relatively friendly and not too freaked out by me. If I just turn around, I won’t face more crap that might ruin my day like if he were to call the police on me or something.
I give Marra the instructions to turn around and we go back down to the stroad intersection. I could walk all the way back the way I came, but I am on the North side of the stroad now, so I could walk up a street straight to my house. It is a quiet street, but I have never found it from this direction before and neither has Marra. I get out my braille display and turn on Blind square on my phone. My husband can listen to blind square as he walks. But with a braille display, you have to be more deliberate. I have to stop at each corner and wait for it to sort of sync and read the information while I am stopped. The display can hang from a leather pack that I can read while I walk, but I am not that coordinated. I always. Have to stop to read it. I only need to find where to turn and then I am good.
I walk and stop at each corner. This is the one thing guide dogs always do, they stop at corners. When she stops and I can feel the curb slant down and get bumpy. I go to the braille display. It tells me I am at 54thstreet. I need to get to 60th. I walk and walk and walk some more. I can tell Marra is slowing down a bit. She is 9 now, and she will probably retire in one more year or so. So now, our walks often end up at a very slow pace. As we walk with the loud cars to our right, I can feel every step she takes, steady on the flat pavement. She takes two steps to my one, and every two steps I feel indicates a safe place to land my next footfall. Finally, I stop at the next intersection and blindsquare reports 60th street. I turn left to the north and it’s all smooth sailing from there.
My little twinnies, the ones that made me a mother, are now 18 years old. Like many parents, I can hardly believe how fast it went. But the fact that 18 years has passed is very significant to me.
When I think about “18 years,” I think back upon the worst moment I had of being a mom. It was when my twins were only about 3 weeks old. They had been born via C-Section about 5 weeks premature. I was recovering from this plus an unexpected eye surgery a couple of weeks prior to their birth. I could see a bit of light out of my left eye, but my better right eye was blind now. I have always had low vision, but I was adjusting to a a new level of blindness. My children’s father, who is a C6-7 quadriplegic, was having difficulty lifting the babies out of their crib. It was a bit of a mental thing. He could do it with a special swaddling blanket we had gotten with loops on the corners. Or at least he had done it before they were born with dolls and flour sacks. But with live babies, he lost his nerve. So, instead of taking shifts where I could sleep, he woke me up all the time whenever they needed to be held or fed.
I was going on…I really can’t calculate how many days of extremely little sleep. My premature infants were having difficulty suckling and were a challenge to feed. And as I sat on the couch, I felt absolutely abandoned. Because for the most part, I was. At that moment, I felt like I could not go on for 18 years this alone and this tired, with this much hatred coming my way. The concept of “18 years” of parenting ahead of me was overwhelming. For pretty much the only time in my life, I thought of how I could kill myself without leaving the babies unattended or doing it with someone else in the house who could take care of them. At that time, they really couldn’t go more than two hours without care and not have grave risks to their health. The logistics of that problem despaired me even more.
I knew my decision to have children as a single disabled mom would raise eyebrows and I knew it wasn’t a decision everyone would make. But I had an education, good skills, and a decent full-time job at a university. I told people I was planning to have kids. I did not hide it. People just sort of went along with what I said without much comment. But looking back, I guess people did not believe me? Because the reactions I got when I told some folks found out I was pregnant were beyond any expectation of negativity. A family member walked out of the room and didn’t come back. Another one, whom I had told in what was supposed to be a celebratory dinner, left the restaurant and chose to walk home. People wrote emails about me that got back to me that talked about how awful I was, and I was shown a video clip of another family member (who wouldn’t decide to come meet my kids for over 2 years) where they talked about how I was going to fail behind my back. Even strangers on the street said vile things to me when I began to show as pregnant. People who walk around with white canes are not supposed to also be pregnant apparently.
Not to seem over confident, but I had never had any doubts about my ability to be a disabled parent. NONE. I had been taking care of other people’s children for forever. I grew up taking care of kids. I had two degrees in education and spent countless hours in classrooms taking care of kids, some of them very medically fragile. To pay for expenses during college, I had started an ad hoc business providing care for kids with significant disabilities. I worked in classrooms where kids were labeled “behavior disordered” and I took care of kids in their homes who used oxygen and life support. I worked for two years in the Child Life department at a children’s hospital. I worked both in the oncology unit and the PICU. I was a certified nursing assistant with CPR certification. I knew how to take care of people with a variety of needs using alternatives to vision when I needed them. I even counseled other blind parents on ways to adapt to tasks as a blind parent.
All the things people worry about with blind parents did not phase me at all. How to feed a child when you can’t see their mouths? I had already done this many times. How to know if your child has diaper rash? Easy, you can tell by the way their skin feels and how they react when you touch it. How to find them on the playground? Bells on their shoes and also getting up on the play structures with them. Getting them around with a white cane or guide dog? No problem, with the right stroller, pulling them behind you works just fine. Knowing when they are up to something? Well, this develops over time, but its all about communication, knowing when the silence is a little too silent. Context and a bit of a sixth sense. Did my kids ever sneak around me and do things without my knowledge? I’m sure they did, but not any more than anyone else’s kid does. Parenting while blind was not all that hard and not something I worried about.
But I did not count on how the ablism I experienced would be passed on to my kids.
About 2 weeks before the twins were born, right after my eye surgery I was on bedrest. Some family of the kids’ father called me up and offered to bring me dinner. How nice of them, I thought. I did not feel like eating, nor did I feel like getting up and socializing. But since they made the effort, I forced myself to. When they got there, my partner and I were ambushed. They were just yelling at us. “How are you going to get through the first 30 days?” They demanded over and over again. I suggested that I could get several people together to take shifts or days to spend a few hours helping me out, just until my C section healed and I was back on my feet in a routine. “No one wants to help you,” they said. “Everyone expects these babies to end up on their doorstep when you can’t take care of them.” I was blindsided. Ok, I said. No one has to help us. Fine. Don’t worry, no babies are going to be left on doorsteps. It was so hateful and out of left field. What had I ever done to deserve this? In the ten years I had known them, they had helped me move twice, and done some other stuff for my partner, much of it was unsolicited by us. It seemed like just, family stuff. And if it were not to them, I would have appreciated knowing that they felt this way a little bit before I was due to give birth. But I was never in the position of being taken care of on a daily basis by anyone.
Even in the hospital, some of the nurses were not on my side. A CNA came in to tell me in the middle of the night that the nurses had called CPS and said we couldn’t feed our children. Since my kids were premature, they had some eating issues. This was very common. I was both pumping milk, and breastfeeding and bottle feeding two infants with no sucking reflex the entire time I was in the hospital. But their weight was dropping. Nearly every other mother I have ever talked to who has been in this situation said that their kids went on to spend time in the NICU with a feeding tube until they could eat enough by mouth. My kids never got that care. I just got accused of not being able to take care of them. Even the nurses couldn’t get them to eat much.
This horrified me and I was able to mobilize some people who I knew would rally for me. One was a county health nurse that I specifically let into my home to create an ally for this exact situation. Although she was mostly helpful and did keep my children from being taken away from me by the hospital staff, She also asked me if I wanted to give my kids up for adoption. Do other mothers get asked this if they don’t bring it up first? I haven’t heard of any.
I had started to learn over time that people who judge you and think that you will fail at something really want to be right about their judgement. So they will do things to help their prediction come true. I remember when a couple of my high school classmates became pregnant. I noticed that people who thought they were terrible girls who screwed up their lives actually caused problems to specifically make their situation extra hard. And this is what was happening to me. I did have some challenges: premature twins, a C-section birth, a recent eye surgery that made me have to adjust super quick to my new level of vision, a partner who–although did help me in many ways–was unable to help in other ways as we had originally planned. Those things were legit challenges. But instead of getting more help to meet these challenges, I got less help than any average person would even get. I got hatred and scorn. Not just by family and friends, but by the very people who were paid to be in positions to help me like lactation specialists and social workers. People wanted to see me fail and were keen to make that happen.
So all that caught up with me while sitting on the couch that one day while my babies were intermittently sleeping. Never underestimate what a serious lack of sleep with do to you to mess up your brain and make you unable to think straight and solve problems. I could not function and so it seemed like everyone was right and I was failing and there was literally nothing to be done but to off myself and let these babies be adopted.
And then I saw John Denver.
Yes, John Denver. I was hallucinating. Or more likely, coming in and out of minutes of sleep while sitting there and not even realizing it and having these micro dreams when I thought I was awake. Days before, I had been going crazy by the lonely quiet in my house. My eye surgery was a bit of an emergency. I had no time to prep my house to adjust by marking buttons or things I would use. So I had been just aimlessly pushing buttons until things worked. I was looking for a CD or something to listen to music, but couldn’t see the labels, so I ended up finding a DVD that my dad had left of John Denver’s Wildlife concert. It took me forever to get past the menu on the DVD that I couldn’t see. So when I figured it out, I just listened to that thing constantly. And “Annie’s Song” seemed to comfort my kid.
So, of course, John Denver sat down with me and told me my main problem was that I needed to take a nap. “I can’t!” I said, ” there is babies and breastfeeding and pumping and formula making and diaper changing! How?”
“Just take the money!” he said as he threw piles of cash on me. “just take it, no one cares.”
“What?” I said as I jerked myself awake.
Later that day, my partner came over with a number for a nanny service. he said we could get someone probably that night or the next night. And he said we will just deal with the cost with credit card debt or whatever. And I thought, “John Denver told me to just take the money. John Denver is my dad’s DVD.”
I called my dad. “Dad, I have made a mistake.”
“You mean, it was a mistake to have kids?” He asked.
Goddamn you people and your absolutes about my failure. “No,” I said. “I made a miscalculation with how many people I thought could help me and what (my parter) would be able to do. Its a temporary issue and I will get a handle on it. But right now I need to sleep and heal and get my energy back. So I am going to stop paying you rent for a few months, OK? Think of it like the money you never had to use for a wedding or college or whatever. It can be like your baby gift that would really help me out a lot”
He never said ok, but he never got mad either. I just took the money. I simply stopped paying him for a few months, then I resumed. He just let it go. I saved $3600 in rent. I paid out about $6000 in nanny fees over the next three months for a nanny to come 5 nights a week. By the time the kids were 6 weeks old, I was feeling pretty ok and out of the fog. By the time they were 3 months old, they were eating, we had a routine, I let the nanny go with my thanks, and I was joyously happy to be a mother.
Most problems are temporary. Don’t let anyone tell you that they are permanent, or worse, your personal permanent failings that you can’t overcome. I had a temporary problem that had a fairly easy fix. I do appreciate my dad helping me out. He also came out and made his lap available to plop a baby or two in when needed. The fact that when I needed help for a temporary problem and so many people were ready to jump to take my kids away permanently is a lesson that I will never forget. Although it is fine to get advice from others, I will never let anyone define my problems or dictate the solutions again.
Although there have been some bumps and snags along the way, the vast majority of my time parenting my 3 kids has been positive, fun, loving and good. That period, just two weeks after I became a new mom and I hit a hard wall was the bottom and it all went up from there.
But the ablism and exclusion continued over the years, and I still have to say that it was something I didn’t predict when I thought about being a blind mom. Of course it wasn’t everyone, but time and time again, my kids have been treated differently because they have a disabled parent.
Although some family members came around and developed relationships with my kids, others never did. I am not speaking about family with good intentions that live far away and are busy with their own lives, I get that. I am talking about living less than a mile away and my kids never getting invited over for family holidays. For some, being disabled means you need to stay in your place, and not want too much or go beyond just being a meek and grateful little disabled person who doesn’t ask for too much or do too much. And it doesn’t matter that I have raised kids without help for X number of years, I am still a disabled person who didn’t know her place. Some people are set in their ideas about your capabilities no matter how much you have accomplished or how hard you try to educate them. It is difficult when ablist attitudes are stronger than love.
So, they missed out. On birthdays and Christmases. The wonder of the first visit to Santa and coming down the stairs to see what was under the Christmas tree. First words, first steps, first day of school, first play, school graduations, all the things, they were there for none of it. They missed out. But bizarrely, every so often we would run into each other by accident. And then it was all hugs and smiles. Sometimes, my kids wouldn’t even know who was coming up to hug them because it had been so many years since they had seen them.
I have a friend whose family was excluded by her grandparents due to religious differences. She was the first college graduate in the family. Upon her graduation, the grandparents took her out for dinner. Everyone was acting like they had known her for her whole life. And later she said, “That was the weirdest thing ever. I just kept thinking, I don’t know you and you don’t know me. And you know what? You missed out. Because I am awesome.” That is kind of how I feel. We aren’t a perfect family but we are a loving, pretty awesome family. and you all missed out. Just because you wanted us to fail and we didn’t.
The exclusion we felt from members of different communities was a whole different beast.
Of course, not all people fit into this category and some were very nice. But many, many times, my kids missed out because of people’s judgement of me as a disabled mom. They missed chances to socialize with kids because their moms wouldn’t let them. I remember my child taking a liking to another kid and my husband invited them to a play date at our house. The mom said, “well, we don’t know you.” So then my husband said we could get to know each other by maybe going to a public indoor playground. “no,” she said, ” I’m sorry, I just don’t really want to know you. I don’t think we can really have anything in common with blind people and so I don’t want my kid to get attached to your kid.”
Another time a group of moms would go to a play space after church service with their kids. We couldn’t go because we couldn’t get there by bus. I suggested we go to another one that was more accessible, at least some of the time. “No, sorry,” they said “We don’t like that one and don’t think we should have to go there just for your kids.” It was hard for my kids to see the other going off together every week when they couldn’t go.
There was the time when my kid applied for a program that was within a school he already attended. It wasn’t really highly competitive or anything, it isn’t like there were not enough spots. But from the beginning, the teacher always expressed concern about my child being “ready” for this program. I asked if there was an issue. She didn’t know of one but was just “concerned.” I asked his other teachers if there were any issues I didn’t know about or whether they thought he wasn’t ready for the program. They said no, he was fine. But this teacher systematically made trouble for us at every turn. First she got mad that we dropped him off too early, even though it was within the drop off time. Then she got mad that we dropped him too late. Then he fell and hit his chin and she acted like this was evidence he shouldn’t be in the program (he was 6, it happens). Every day we got a new ‘talk’ about him but nothing specific. I went in to observe. him and he seemed ok, but she basically ignored him all day and never called on him when he raised his hand. I could tell he was bored so we withdrew him. It just felt like a needlessly hostile environment.
Or times when parents at school functions would sneak out of the room and not say hi when we entered, or move to a different cafeteria seat when we sat down next to them, or refused my offer to babysit then turn around and tell someone else that they have trouble finding childcare. Or just the implication all the time that my kids were “at risk” or “from a troubled home” just because we are disabled parents. Or all the questions they field about how they must have to take care of us. Or just a general “othering” of us. Not getting invited to things, Not getting the same opportunities. Again, I will say that this is not everyone all the time, but it is enough that it does affect my kids in ways I never accounted for or imagined. And no, I am not the only disabled parent to have these experiences. For parents with a visible disability, these incidences are very common.
It makes the kids less trusting of people and it makes them be super sharp in seeing when they are unfairly judged. It makes them a little wary about getting close to people. It makes it so they did not get some of the same chances to be involved in activities and relationships as other kids. It is hard to watch because there is not a whole lot we as parents can do about it. We talk to them about not taking it too personally and that it can be a litmus test to weed out people they might not want to know anyway. But often, sadly, the other kids are not the problem. It’s the parents who are overly biased and they are making it hard for their own kids as well as mine to become friends.
It got to the point where when they were old enough to start going places on their own (which happens earlier for our transit-savvy kids that others) we started staying away from their activities for the very purpose of limiting the amount of crap they have to deal with. It seems like between the choice of being thought of as slightly neglected kids with uninvolved parents vs. having involved disabled parents, the neglected kid scheme gives them a better deal. Its just sad, really. We try not to miss the big stuff still, like performances and big events, but we have purposely stayed out of the way to give them a chance to make headway on their own. Sometimes when we do show up and meet people they associate with for the first time, they have to absorb the shock and bias from other people. Families that were previously nice to them suddenly back off, and they never even talked to us first. It causes issues.
One time this teacher decided to be very concerned about my son because she felt “so sorry for him to have blind parents.” He went to a football game with strict instructions from me to take a specific bus that was right there, but the last bus stopped there at around 10:00 and I wanted him on that bus. He called me, sounding kind of freaked out because he missed his bus. The science teacher kept telling him he couldn’t get on the bus because it was dangerous. She went as far as to kind of physically block him from the gate out. He didn’t know what to do. When he finally had a chance to “escape”, he had to walk about 8 blocks at night to catch the nearest train when he would have been fine to take that bus. He was calling because he thought someone was following him. He said he thought it was the science teacher, but he couldn’t be sure and it was freaking him out. The car was waiting across the street in a parking lot after following him slowly behind to the train station. He was so freaked out, we FaceTimed his entire way home. Later I found out that the teacher WAS following him. I told her that I understand that she probably meant well, but she obstructed him from getting on the bus he was safest to get on, and then scared him by following him creepily to the train station without telling him. She basically thought I was an abuser because I made an almost 15 year old ride a bus that stopped right there and then took him 1.5 miles home. I was a shit parent because I didn’t drive and made my kid ride the bus, something he has done since birth and is comfortable with. I told her she was being biased towards people who use different modes of transportation. I could judge other parents who put their kids in cars. Cars are 20 times more deadly than trains and about 10 times more deadly than buses. Why is that risk ok? My son never wanted to go to another football game after that because he was afraid of his science teacher. (And then the pandemic happened and he changed schools, I think he would have tried again eventually.)
Blindness did not make parenting hard. Ablism did. Having blind parents wasn’t so hard for my kids, people’s shitty attitudes were.
When I think back to the 18 years of parenting these kids, I think I had a plan A, B, and C for everything. But I didn’t consider how much the ablism I experienced and was used to would rub onto them. I think I am pretty much past being overtly angry about it, and I don’t mean to call out and scold people so much as I would like people to think about what they are doing. If some child or family makes you uncomfortable to approach and include, take a moment and ask yourself why. Is it based on ignorance? Is it based on some unconscious bias? Might getting to know them a little better help you get over this bias? People could bring much richness into their lives if they could be just a little more self aware of their own reasons they are excluding some people. I also know that there were always a lot of people who were never overtly mean to us, but who just never engaged with us more than they had to because we “weren’t like them” and that made them vaguely uncomfortable. I would argue that we are much more alike than different.
I was helping my son pick out pictures for a college project that he is doing where he has to do a little bit of a retrospective of his life. We went through 18 years of pictures, thousands of them. It was amazing to me to look back and talk about the last 18 years of our family life. We have done so much fun stuff! We traveled to different states and countries, went on countless “field trips” to museums, plays, science centers, beach weekends, hikes in the forests, school events, swimming lessons, etc. Then there were all the birthdays and holidays and the gifts and traditions like Zoo Lights and Easter on the Willamette River. There was just the goofy things like pretending to be Star Trek crew and putting on little plays to lego builds and funny voices. There was gardening and airplane building and Taco Bell drive thru ducks and Mock Trial competitions. We have had so much fun as a family these last 18 years.
But with a few exceptions, we were in these pics mostly alone. Just us. Recently my youngest son and I went to visit my relatives in the midwest and he remarked that he had never been in anyone’s house before. That isn’t entirely true, but it is pretty close. All of my years of going to church, volunteering there and at their school and we were often still the odd ones out, relegated to nothing more than a polite “hi” at best or at worst, people being openly hostile to us. I don’t know if I could have tried any harder, been any more welcoming or done more to make people feel more comfortable because I feel like that is all I did for years. And then because there is no community, you end up doing everything yourself so you have less time to give to others and it becomes a self fulfilling prophecy.
Now, my little premature twins who made me a mother are going to go off on their own in the next year or two. They will have the option to a degree greater than ever before, to leave the disability world behind and and forge their own, likely less marginalized identities. It’s weird to think about them shedding their minority status. When we traveled last summer, we would go through security and as happens every single time, their dad and I were pulled out and had to do extra security at the TSA checkpoints. When the kids were younger, they would get pulled out with us, but now they just walk on through. My son wrote part of a college essay about it. How he gained privilege he didn’t even understand completely that he didn’t have before. It’s so weird, but it is true! I think when they go off further from us, this kind of thing will happen more and more for them, and I think they are in for a bit of a culture shock. I hope that they will both enjoy the new privilege and also remember to appreciate that others don’t have it. I feel very positive about many aspects of them growing up in the disabled community. I thing that it has given them powerful lessons they will use throughout their lives and are the better for it.
But I am still a bit sad, not so much for us or them but for you. You who (probably aren’t the ones who will be reading this, but) who missed out on everything my funny, smart, creative, mostly happy and often giving children had to offer. And you who missed out on how much fun it was to watch them grow up. And you who let your feeling of uncomfortableness limit you from everything our family has to give. I am doing some ruminating here, and again, I am not mad at anyone, just want to say…try harder. Try harder to move past your feelings of disgust or awkwardness or whatever it is you can’t get past. Try harder to include everyone. You may reap more rewards than you ever expected.
And if you are a disabled person contemplating having children, I still absolutely think it is worth it. Just be prepared for the reactions of people and don’t let it get to you. Try to build community beforehand so you don’t waste so much time on a community where its just never going to happen. Look to other disabled parents locally, too. I do wish now that I had just spent more time with the blind parents that are around me, even if most of them were all on the other side of town.I got invited a million times to “Mommies with Guides” groups and didn’t go because they were too far away, or seemed too “precious” or seemed too much about new blind parents talking about non visual parenting skills I already had. But I probably should have invested more in those groups so that my kids could have developed those long-term relationships with other parents and other kids. Don’t take for granted that your family will be happy for you that you are pregnant, and be willing to help out the first couple of weeks like other families often do. Although I did not hide my decision to become a parent and talked about it often in the 2 or so years I was working on conceiving, I never sat down with anyone and ironed out all of their concerns and made a plan for who was really willing to help and who wasn’t. There is a point to where people will not take you seriously, and so you probably just need to not count on their help. Also take some time to collect some professional allies. Programs such as Healthy Start, WIC or La Leche Leagues are good to reach out to and get to know you BEFORE you are vulnerable because you are recovering from childbirth. This I did do, and I think it saved me in the hospital when my parenting was questioned.
If you don’t have anyone who is willing to help you, it is ok and legit to hire help. This doesn’t make you a failure or prove anyone right about disabled people being incompetent parents or whatever. You have to own it. If you think you will need paid help, get a plan beforehand to both find the help and pay for it so you aren’t in a crisis like I was. (It will be much cheaper, too!) Also–and I think I have done a pretty good job about this–constantly educate your children so that they can develop an inner self confidence that is not dependent on what others think. Be really open with them about marginalization and oppression we face in the world, so they will learn to identify it and not take it personally when they are excluded. Also, as I have mentioned many times, there are always people out there that will support you, you just have to find them. You will have to look longer and harder than everyone else. Keep looking, keep educating, keep trying and you will find them. They might not be where you wish they would be, so maybe not at church or your kids’ school, but online folks are rooting you on. There is absolutely nothing wrong with developing internet relationships (and helping your kids safely do the same). People are out there and ready and willing to rally for you and your kids, but you will have to cast a wide net to find them. Keep casting and don’t give up. Finally, enjoy your beautiful family, no matter what the naysayers say. Know and appreciate in your heart what you have and know that you (and your kids) deserve the life you have built together like no one else ever could.
Joni Mitchell’s performance of her classic “Both Sides Now” has been going around the internet today. Have you seen it? Watch it if you haven’t. Just the reactions of Brandi Carlisle and Wynonna Judd alone make it worth it, besides Mitchell’s obvious giddiness at the end. Joni Mitchell was more someone of my parent’s generation in the background of my life, but this song, released the year before I was born, has just always been there. I never gave it much thought. But even I was moved to hear that Mitchell, at 78 and recovering from a brain aneurysm 5 years ago that took away her ability to perform her songs, was able to come back and perform last weekend. You never know when your last curtain call is, and she has a few bonus ones here it appears.
Being a Sick Person as of late, I have had to deal with the reality that there are things I’ve done that I may never be able to do again. I don’t know if I will really be able to ice skate again, I rode a bike around an apartment complex recently, but I doubt I will be able to do the carefree riding down an ocean path that my son, Avery is just discovering now. My father took his last trip to see me in 2019 and probably didn’t think it was his last, and now he is 80 and will likely remain in Kansas, having traveled America extensively but never gotten out of North America. I was not sure if I would ever get off this North American rock in my lifetime, either. But just recently, I did.
I’ve been to Europe! I can say it now. I spent a month in Sweden. I had my 52nd birthday in Sweden. I’ve done a thing that as a Sick Person, I wasn’t sure I was going to be able to do.
I met my husband, Nik, in 1993. And then it took us 17 years to get married and another 12 years for him to take me to visit his family in his hometown in Gotland, Sweden. In between that time, there has been marriage, friendship, divorce, kids with other people, kids together, job losses, businesses, houses and apartments, custody issues, poverty, death, birth, and disability. But always he said he would take me to Sweden, and we would stand in the church of his tiny village called Stenkyrka and say our vows to each other. We tried to do it when we first got married, but we had immigration issues. We tried to do it other times but there was no money, or there was illness or work. We tried to do it on our tenth anniversary and there was a worldwide pandemic, and then I got told I needed a kidney transplant and couldn’t be more than an hour away from the transplant center. And as my energy depleted, my hopes of ever getting to Sweden just started drifting away. Maybe, like my dad, I will never get off this North American rock.
But it was more than just going there to visit. Nik came to the US for me, and he didn’t really want to. It was because my kids (and at the time, his kids) were in the US and I couldn’t remove them from the US. We thought we would stay a few years, sort things out and wait for the kids to get a bit older, and then we would go back to Canada, where he had been living. It had always been the sort of background plan.
And so we worked and worked to do all the right things, and juuuuust when we were getting into a position where we could consider making a move…all the new shit went down. As the years went by, we were getting priced out of Canada, whose housing crisis is much bigger of an issue than even in the US. Housing is the Achilles heel of Canada, like health care in the US. But then, Nik’s best friend suddenly died, and he had always told us (possibly in gest, because what healthy person thinks they are going to drop dead one day?) that he was giving us the house when he dies. We didn’t take it seriously or anything, until the very first thing his mother said to us when we went to the funeral was “Do you want to live in Grant’s house? We want you to live here. Lets make it work.” But then…before we could even update the Canadian passports…it blew up. Kidney disease, pandemic, his mother’s illness and death. The house was sold. Bye bye, Grant, and Toronto and Roncesvalles and High Park and all the memories built there. Poof!
Until one day, when on a whim I decided to download a Swedish language real estate app and learned enough real estate related Swedish words to use it. On Gotland, Nik’s island in the Baltic Sea, there were little cottages that were even on a little plot of land to garden on, and maybe have a couple of chickens, and let our dogs run…and we could AFFORD THEM! And for such a rural/small town area there were even buses and planes and ferries! And as the pandemic had shown, we could continue working remotely for the most part and built our business slowly in Europe as we kept our business going in the US. I mean, it would be an undertaking, but we could do it, except—Kidney Transplant/Dialysis prison.
So, this trip was both a trial and a consolation prize. My life could go either way. I could get a transplant and have lots of great, productive years left (Be Super Pigg!) and go on all kinds of European adventures while keeping a lovely garden, having my kids in college in Sweden (for free!) and maybe even bring our brand of vocational rehab and assistive tech to Sweden to rally the blind folks there. To work but also ease into retirement where we will build community and enjoy a slower pace in our old age.
Or this trip could be my “Make a Wish” trip. My last hurrah before my health declines dramatically, and I die young(ish). And maybe this trip is Nik’s and my last big adventure and part of it is for him to reconnect with his family and home country so perhaps he might have a soft place to land if he becomes an early widow? And maybe this will be my first and last time I will go to Europe, my only time to meet his relatives and see his hometown, and the last time I will see all five of our kids together.
I see this trip from both sides now. But I don’t know which side it is.
But in any case, it was a wonderful trip. I don’t know how much of this is placebo or rallying or the change of scenery or actual real environmental factors, but I had more energy on that trip than I have had in the last 2 years. I was still a bit slower than the others, but I did stuff all except for 2 of the 32 days we were there. There were a few days I bowed out early, but other days I walked up to 4 miles and days I swam and rode bikes and had to navigate and socialize with people with both a hearing and language barrier and I did it all. It wasn’t even hard. Am I really that sick even? Is this reality or is my home chronic illness the reality? I can see it from both sides.
On facebook I did little photo posts where I told all the things we did and talked about the places we went. But it was not the full picture of what was accomplished. I feel like in sort of helping Nik take a bit of control and responsibility for our travels, he was able to get some added peace with his family. (Almost all disabled people suffer from some level of ablism from their families who excessively worry and feel burdened about stuff they don’t think we can do even though we do it every day at home, but then resent us for the fact that they worry and feel burdened. There is no winning, which is why lots of disabled people live FAR from their families.) We both wanted to work out our own transportation for the most part on this trip, via bus or taxi or uber or whatever. But this creates a fuss with families. I told Nik, “um, you get that you don’t need to tell anyone or get their permission to ride a friggin’ bus. Just DO IT!” It’s amazing how all of us need to be reminded that we can actually be the same grown-ups we are in every other capacity of our lives, even in front of our families of origin. It has always been hard to understand why families struggle with this issue so much, but as I watched Nik’s mother with Nik and the kids, her love is obvious. It’s almost as if sometimes that love is so much or so close that they can’t step back and see the whole you for who you really are. And as disabled kids, we just have to try to appreciate the fact that they are doing their best with the love they have.
The “both sides” of that is that as we worked on his relationships with the older generation, we also got a chance to spend it with the younger generation. It was great to have all 5 kids together. I did not get to spend a lot of time with Nik’s daughter, but one of my favorite memories will always be when she and my daughter, Aaron, rolled down a grassy hill together. My daughter is transgender, and neurodiverse, and is a very unique person. At times she is hard to deal with because she is EXTREMELY literal and misses social cues. At other times, she is the cat’s meow. Creative, talented, personable and empathetic. But…at all times she is unconventional. I loved how the two of them just accepted each other and literally “rolled with it.” Nik’s daughter is a bright spirit that can make friends and family with almost anyone anywhere she goes.
In all the shenanigans that have gone on with our kids’ 4 parents (all of whom are blind) it was Nik’s daughter and son—most especially his son—that took the brunt of it. We were never able to be there for them as much as we wanted to be. I don’t think any of the 4 parents are bad parents, or terrible people. I do think that we all did the best that we could and loved all those kids. But still, there were aspects of our decisions that had to be hard on the kids. Nik’s son, since he was very young, has always been a light in the murkiness. He has always been the person who brings people together, a peacemaker. Half Swede and Half Ojibwe and queer, he has a comfortable ease with his identity. As he becomes an adult, we sometimes worry about his seeming lack of clear direction. But I can’t help but admire the free spirit in him that is still all about making the most of any given situation, putting people at ease, and how he can be in the moment and recognize the largest and tiniest joys in life all around him. Avery loved spending time with his big brother, and it was so nice that they all had several weeks together to bond. I really enjoyed the time with all the kids.
Nik works way too hard, sleeps too little, and takes on too much responsibility at home. So, it was also good to see him slow down and sleep at least 8 hours each night. I saw him get physically healthier before my eyes. Although Nik has support people in our business, he IS the business, and it is a lot of pressure. His blend of being able to teach people where they are at and put people at ease while having all the tech know how to back it up as well as real world experience is extremely rare in our industry. Clients ask for Nik and only Nik a lot, and he is really the only person who can do what he does the way he does it. I can’t do what he does. So, to finally have him be able to have a real break was a gift. And we could do this trip (him taking 5 weeks off! 5 weeks!) because of the many gifts he has and how hard and tirelessly he has worked to make our family and company into a success. I said to him one day, “I don’t think your family gets how much of a catch you are!” And its true. I joke that I am merely “Nik’s wife” because as soon as I mention him to anyone, it’s all about the gushing people do over him. We may not be the beautifulest couple in the world, and we may walk around like awkward blind people, but what I have in Nik is extremely rare and wonderful. And like he said he would, he brought me to Sweden.
Which is why I about lost it altogether in the Stenkyrka Church. Our vows that we did there were nothing extravagant. It was pretty quick actually. Nothing like the wedding that I thought I might have there someday. I think that was why we did not only (quickly) do our vows to each other in that church, but in all the churches we went into, even ruins. (And there are a LOT of churches in Sweden.) In Stenkyrka, though, it was special. I had heard about and seen this church since I was 21 years old. And finally, I was standing there in it with the person I love. We always talked about getting married there. So, to not be able to do it until 31 years later—and to finally be able to do it after 31 years was a mix of happy and sad.
Again, I saw both sides. Here we are! After all we have been through! We are so lucky! I am so lucky! We made it! But also, what would have it been like if we had done this say, 25 years ago? There were so many roads available to others that we wanted to take but were closed to us. If we could have stayed here, where would we be? What would have been gained and lost? Maybe there would have been none of our babies we have now. But who is missing here that we will never know? If we would have stayed on Gotland, would we be successful farmers? Assistive Tech entrepreneurs? Or would we not have developed our American brand, tough nonconformist edge that has gotten us so far? Would my kidneys even be this damaged? Or would they be worse? Would I be dead?
And will I ever be back here again? Will I get to have a 20th anniversary wedding or a 40th? Will Nik walk in here next time, lonely after I am gone and remember this time with sadness? But we made it here now. We made it here now.
On our last day in Gotland, we had very mixed emotions. We had a day of packing and cleaning before catching a flight in the evening, but we had to do one last thing. Nik had already swum in the Baltic Sea, but I had wimped out due to the cold water and the rampant seaweed on the beach. The long dock that Nik jumped off of was scary to me. But I wanted to swim in the Baltic, because I was sick of saying no to things and wanted to say yes. Soon I would be at the airport, and then I was in for over 24 hours of being treated like shit, not being able to hear or see what was going on, searched (I get searched EVERY SINGLE TIME. On the trip home, I got pulled, searched and patted down 4 times). I wanted to do something free.
It was only about 1 block to the swimming dock. As I walked down the same street I had walked down for the past several weeks, it looked like my life. Now I am in a beautiful setting, a treelined road with almost no cars. At the end of the road was the sea. The unknown. I kept putting one foot in front of the other, getting closer to the water, not knowing what is ahead or would be found there. Just water as far as the eye could see. It could give you life and joy. It could kill you.
We walked down the dock and talked about whether we should swim together and decided against it. It was safer to have someone on land. Nik’s and my disabilities sometimes complement each other, sometimes clash. We work with it. Sometimes I am the most disabled, sometimes he is. The other one tries to fill in the pieces. In this case, I was the most disabled. Nik is a stronger swimmer; he is not an anemic woman in kidney failure. He can also hear.
When we got there, Nik jumped in right away. I took one of our white canes and tapped it on the dock every few seconds as a sound cue. The water was very cold, but I watched a swimmer in a wet suit swim back and forth like he was swimming laps at the club in 80 degrees. But I noticed, he too had a spotter on the dock. I thought of my high school and facebook friend, Jay Gallentine, who used to do iron man competitions but now serves as a “swimming angel,” someone who swims in lakes and seas during competitions to help out anyone who gets overtired or panicked. I thought it was kind of cool that I was a swimming angel now, too, in a way. Nik followed my banging cane and came back shortly. And then it was my turn.
I pretty much jumped in without hesitation. My first thought, of course, was “Motherfucker this is cold!” Like, sickly cold. My next thoughts were that even thought I was coming up to the surface, I had no idea where I was or what I would do. It occurred to me that I didn’t know if it was 6 feet or 50 feet deep here. As I reached out for anything, It turned out that I was only about two feet away from the dock, and I immediately got out, shivering to the point where I felt sick and nauseous.
I was shivering uncontrollably. As I had discovered as a Sick Person, my body has a hard time with temperature extremes. It just doesn’t recover like it used to. It can take hours. Great. I was pretty healthy this entire time and now I’ve fucked it up and will be miserable all the way home. So much for my goodbye experience. Kidney disease ruins everything. And then I cried. I cried about this being my last day of freedom and when I got home, I would be in kidney jail, waiting, waiting, waiting not only for someone to die so I could live, but for some bureaucrats who have never met me to sit around in a meeting and decide whether I was worthy of that gift. And I cried for the life maybe Nik and I could have had maybe years ago if there wasn’t immigration, or disability discrimination, or poverty, or lack of health insurance, or families who have no clue about our lives or dead best friends and their mothers or any number of stupid choices we made that when we look back, weren’t really stupid choices at the time, they were the only choices available to us. It was as if Gotland had come to symbolize all the hope and promise in the world and I was being forced to leave it, kicking and screaming. As if I wasn’t still a Sick Person on Gotland and my disease wouldn’t come back to haunt me here eventually. Nik “there thered” me, but what can you do with a shivering sputtering person who is crying over silly illusions, and you have a plane to catch?
“I’m going back in,” he says after we had sat there awhile and pretty much dried off in the soft wind. “But I need you to tap harder this time. I couldn’t hear it very well last time and had no clue where I was. Maybe tap on the ladder handle bars.”
BANG! BANG! BANG! I rammed the cane into the metal handlebars. The thought occurred to me, what would I do if he didn’t come back or needed help? Could I go in and get him? “Could I be a swimming angel for real? I certainly did not have Jay Gallentine’s swimming prowess, vision, or hearing or wet suit. It was probably an illusion, but I needed this illusion so I decided I could. I could and I would. There are many things outside our control, but I am not losing him because I can’t bang hard enough or some shit. I would go save him and I would find my way to the dock or at least shore, because this little ceremonial Baltic swim will not be our demise. I could save him. We are at the same time weak and strong. This, is also a both sides thing. Strength, or how much we have of it, is also much the illusion we make it to be. The truth is, we will make it until we don’t anymore. No one knows when the last time we can save ourselves will be. There is power in the illusion.
He came back ok and we sat in silence for a while. It was a warm morning with a light breeze. There were gulls flying and way off in the distance, a sailboat or two. The good swimmer and his spotter had left and we were alone. It was time to say goodbye to Gotland. Softly, in the depths of my brain, I heard “Lie back and the sea will hold you.” I knew immediately it was from a poem by Philip Booth that someone had given me just after my twins were born and I felt like I was going to drown in blindness and diapers and C section scars and premature babies who wouldn’t eat. Now those babies were nearly 18 years old and I never felt like I was close to drowning again.
Lie back and the sea will hold you.
“I’m going again,” I tell Nik. “And this time I am not going to freak out.”
Let your head be tipped back in the cup of my hand
“Go for it,” Nik says.” I’m here for it, you can do it.”
Gently, and I will hold you.
I jump in. “FUUCK it is cold.”
Look up! Spread your arms wide and look high on the gulls.
I flash panic, but decide I am going to enjoy this. Its freezing, but I am calm and I swim out. With my vision, I can sometimes see the horizon line between sea and sky, but now I couldn’t. I look out onto a bluish void. It feels strange. Like I know the dock isn’t really that far behind me, but I can also convince myself that I am alone in the middle of a vast, cold blue sea. I taste salt water; it’s not as salty as the ocean. I muse about how salt water is bad to drink but can also hold you up. Great. I am now seeing both sides of salt water.
For those who collapse small and hidden will drift into the bottom of their own fear.
What if I am really all alone in a huge sea? I can hear nothing. I see hazy blue wherever I look. Like I have faith that Nik is not too far away, but what if he is not? Or what if he can’t save me?
Lift your breath wide and free in your chest.
I spread out and lay back. I am very aware that I don’t have the ability to hear a cane banging on the docks. I am in this wonderfully cold tactile experience in the outdoors, but also its kind of sensory deprivation. I am deaf and almost blind. I could easily lose my way. I go back to my early blindness skills training. The very first lesson. What do you know? What do you sense? Where is the sun, warm on your face?
Your compass lies not in the dark sea, but the indigo sky!
I rotate around 360 degrees. I try to feel the direction of the current and the sun on my face. The sun is easy. It is so bright in the early morning sky that it blinds me into squinting. I close my eyes it is so painfully bright. In doing that, I can feel it, warm on my face. Such a contrast to the cold water that is so cold I can’t really get a read on the current.
And you will dive and swim soon enough where the tidewater meets the sea.
I try to yell to Nik to get a read on him. If he yelled back, I can’t hear it, but my yell was wimpy, it got caught in the tightness of my shivering throat. Yep. I need to swim into the sun. Towards the dawn of the east. I will either hit the dock or if I miss it, I will hit the shore. The sun is both blinding me and guiding me. I swim towards it.
When you tire of that long thrash to your island, lie up and survive.
I swim but feel like I am traveling nowhere. I tell myself it is an illusion and I keep going. As long as I go toward the sun, I will hit the shore or the dock. Suddenly, the sun is gone to shadow, and I reach out. My hand hits the hard cement of the dock. I feel my way over to the ladder and pull myself up. I shiver, but the warm, sandy cement dock feels good on my feet. Nik and I stand there and warm up while several sea gulls fly in spirals around us. Nik says there must be something dead around us, “Oh, hush up,” I demand, “they are saying goodbye to us, and wishing me well and to come back some day. “ He laughs, but buys in to my illusion.
Sometimes, the only way around fear is through it. Sometimes, the only way to move toward it is to decorate the path with your flowery illusions as you go. Sometimes, the sun and the water both threaten you and save you. Sometimes, you need both the illusion and the reality, you need to believe in the hard reality and the blind faith. When you can’t see and hear, you take what you have in front of you: the warmth of the sun, the taste of the salt water, the smell of the misty air, and you fill in the rest of the space with your illusions. If there is one thing that blind people know how to do more than anyone else, it is to step assuredly yet softly into an unknown future.
Lie back, my child. Let your head be tipped back in the cup of my hand gently, and I will hold you. Spread your arms wide, lie out on the stream and look high on the gulls. A dead man’s float is face down. Look up! Your compass lies not in the dark sea, but in the indigo sky. Lift your breath wide and free in your chest. For those who collapse small and hidden, Will drift to the bottom of their own fear.
And you will dive and swim soon enough where this tidewater ebbs to the sea. My child believe me, when you tire of the long thrash to your island, lie up, and survive. As you float now, where I held you and let go, remember when fear cramps your heart what I told you: lie gently and wide to the light-year stars. Lie back, and the sea will hold you.
When I decided to become a parent, I had thought I would do it more or less like my mother did. She was a career woman, my sister and I went to a home-based babysitter who became like a grandmother to us, and my mom worked full time. We went to public school and in upper elementary, we were the proverbial “latch key kids” of the 80s, watching ourselves for the 1-2 hours before and after school. My parents went to work, I went to school. My school was my responsibility and besides going to parent teacher conferences and the occasional school event, my parents stayed out of my education.
When I was trying to conceive, I worked full time as a research associate at a university. My pay was decent and I lived in a nice 3 bedroom apartment with my long-time companion/partner. We had family down the street. No, there wouldn’t be a ton of money, but enough, and enough stability to raise a child. I figured I would take my 12 weeks maternity leave, have found a good childcare setting and go back to work. I knew the first few years of having a toddler in childcare all day long would be the hardest. But eventually, my child would go to the neighborhood public school, then go to maybe an after school program or come home to a house that likely wouldn’t even be empty, just like I had done.
Then life intervened.
The first thing that thwarted my plans was twins. I was having twins. Even though I had taken all the precautions in working with my doctors to try to conceive to avoid a multiple birth, it happened anyway. When I checked on childcare for infant (12 week old) twins, the costs were astronomical. I would be paying up to $2400 per month for childcare. I pretty much might as well just stay home, it would in some ways be cheaper.
Then, at 33 weeks into the pregnancy, I lost my vision. I had a retinal detachment. In all my preparations about seeing whether it was safe for me to become pregnant because of my Alpert’s syndrome, no one indicated that I would risk losing vision. No one had ever heard of this happening. So, I laid awake during an eye surgery that would need follow up surgeries, and I contemplated how I couldn’t even use my computer anymore. It had been too long since I had blindness training and I didn’t even have the right software on my computer. I knew I could adjust to losing more vision, but I also knew it was going to take months, along with having two babies to take care of. I didn’t know how I was going to keep my job, so I had to quit. Luckily, I was still doing attendant care work part-time, which I knew I could do again eventually, much easier than going back to a full-time job…at least for now.
Then my twins were born a bit prematurely at 34 weeks and I could see that even if I would have been ready to go back to work 12 weeks postpartum, they would not be ready. They couldn’t eat properly yet, they were only 5 pounds, they were tiny and they needed significant help getting enough calories down in the first 3 months or so. My local kinder care was not going to take them anyway until they put more weight on and ate without needing so much support.
So, in the early days of my first time foray into parenting, my life was very regimented and involved pretty scheduled round the clock care for the twins. When your kids don’t seek out food and fall asleep after seconds of attempting to suck and you are feeding them drops like a mama bird to her chicks, there is no “feed on demand.” You feed on a strict 2.5 hour schedule, with sleep in-between. My life was slowly wake them up, change them, feed them, let them sleep…repeat, repeat, repeat. And that is all I did. In the minutes I had here and there between feedings, I slept, worked on my own adjusting to blindness stuff, and ate. Work, even attendant work, went out the window.
But as the kids got a little older and heavier and started to eat better and stay awake more, I started having “school.” It was just playtime, but since the schedule was still pretty regimented and I was so bored, it became a bit of a ritual. I would have them do tummy-time, I’d sing songs to them, I’d do some range of motion things with them, I’d give them little Montessori-like tasks to do like having them reach for things or find something under a blanket. It was built into the schedule along with feeding and naps. I didn’t consider it homeschooling at the time, but when I look back, that is when I started homeschooling, just like all parents do.
I was eventually able to go back to part time in-home caregiving work, taking my kids with me. But I was also starting to look at preschools. I still could not afford a regular daycare-preschool. But I looked into a parent coop preschool where you pay but also do volunteer hours. It was a good program, but the volunteer hours were about 8 hours a week, which most people did when their kids were in the school. Because I had twins, they required that I do 16 hours a week, and I had no one to watch my kids during the extra hours I would have to do outside of the time they were in class. It wasn’t going to work out.
But someone told me about Village Home Education Resource Center (VH), and this was where my real cognizant homeschool adventure really began. I had just heard that I could go to a sort of “mommy and me” preschool program there once or twice a week, and there were community duty hours required, but it was more on the order of 5 hours a term, and they did not make me do twice as much because I had twins. So that is where we started, at Terry Jordan’s “Little Villagers” class. And this is where I met the homeschool moms and started my second “college education” in education.
My son will tell you there are two kinds of homeschoolers, the religious ones and the hippies. (I would classify them into three main categories, the religious, the hippies, and the public school exiles, but more on that later.) He would say the VH parents are in the hippy category. And I would agree. In Portland, most of the homeschoolers are pretty left leaning. Village Home was a manifestation of the type of homeschooling family you found here on the “left coast.” But when I had conversations with the founder of Village Home, she told me how when she started homeschooling several years prior, it was the extremes on both ends, but the range was getting filled in the middle. And she saw the need for a community that catered to a middle ground. Village Home is a learning community for homeschooling families that provides classes that kids can pick from each term. It is more like a community college but for K12. There were some floofy, woo, flowers-and-herbs for breakfast flowy dress moms there for sure. But it was pretty mainstream. Very few families were that far out there to either end. For me as a nondriver who wanted my kids to have community and classes I couldn’t easily teach all in one place, it was a great discovery. More than the parents, though, I enjoyed the kids. These kids were mature, eager to learn, sociable, polite, respectable, creative, dedicated kids. Oh, THESE are homeschoolers? THIS is what homeschooling can produce? I had to find out more.
Lots of books were recommended to me. And so I started reading and researching. I did have the ideas of homeschooling kids that you hear quite often by those who have not given it too much thought. They won’t keep up with their peers, they will be weird and uneducated. They won’t have any friends and won’t have any social skills. It is some mom sitting at the kitchen table with her kids all day, teaching them that the earth is flat and that Jesus rode on the backs of a stegosaurus. I had all those preconceived notions that you still hear today. But look at these homeschooled kids! They aren’t any of those things.
I read John Taylor Gatto (Dumbing Us Down) and John Holt (Unschooling) and Susan Wise Bauer (The Well-Trained Mind) and Grace Llewelyn (The Teenage Liberation Handbook) and Alfie Kohn (Punished by Rewards) and Jonathon Kozol (Savage Inequalities) and many other homeschool books. I researched websites that talked of the studies that have been done on homeschool outcomes. I found that on average, homeschool kids–no matter what race, socioeconomic level, parent level of education, or gender–got two grade levels higher than public school kids on standardized tests. They also did better on adaptive behavior scales. They also were not only becoming more and more accepted at colleges and universities, but they were sought after due to their ability to be self determined and manage their own learning so much better than many public school kids. Aside from very expensive private school students who were largely all white and upper middle class or upper class, homeschooled kids achieved the greatest outcomes. It was the poor man’s private school option.
What I learned about homeschoolers also dovetailed right in to everything I had experienced in my Teacher’s College training. Especially in special ed. Homeschool was the very epitome of low student:teacher ratio and individualized education. Curriculum and instruction could be tailor made to each student’s zone of proximal development. Kids can have more buy-in to what they are learning because of such customization and if something doesn’t work, you can just instantly try a different approach. The freedom of this can have amazing results. There is no “catching up” or “getting behind” because the speed can be whatever you want, and can change pace as needed. There is no wasted time, there is little boredom, there is the whole world as a classroom.
It all looked good to me, but I did not make my final decision until the day we went to the “kindergarten round up” at their local school. When I dropped them off in the kindergarten classroom, I saw that there were 54 kids in one room with 2 teachers. The room was partitioned by some little toy kitchens and bookshelves meant to be two classrooms, but in essence, it was 54 five year olds in one room with two adults. The parents went off to a meeting in the library. I thought they might talk about the programs they had or what the kids would learn, but almost the entire thing was about how to drive your car to drop off and pick up your child. This seemed to be the biggest deal and the biggest concern. They talked a bit about bussing, but nothing was said about the fact (that I noticed on the way there) that the school was surrounded by streets with no sidewalks and some busy roads with no traffic lights. Kids weren’t really safe to walk to this school. I snuck out a few minutes early and went back to the kindergarten room where my kids were. It seemed they had them making a necklace on a string of fruit loops. My kids were doing ok, but I could tell the noise level was getting to Aaron. There were kids there that were just bouncing off the walls. It was loud. My kids were done with their necklaces, and they wanted to go out to the playground right outside the classroom. I asked the teacher if that would be ok. And she said that she needed them to sit quietly at their table until the rest of the class were done. I told them to follow her directions, and I understood why she needed to do this. If my kids went outside, the bouncy kids would see that and create more chaos. I felt like the teachers, with 54 very young and new-to-them children, were barely keeping it together. I watched my kids sit at the desk, not unhappily, but just kind of….wasting their time. And I thought…I can do better than this. By far. So I asked them, “Do you want to go to kindergarten here or do you want to continue going to village home and work on learning to read and do math at home?” And they said they wanted to stay home. They both thought the room had too many kids and was too loud. And so we were officially homeschoolers.
There are lots of ways to homeschool, but almost no homeschooling parent replicates the 6 hour school day of public school. There is no need to as the class management piece is not there. In a college class, I was told once that elementary students get an average of 46 minutes of instruction a day. The rest is procedural. (It might be more now that recess and lunch have been shortened and eliminated.) So, it was always obvious to me that school is 10% formal learning and 90% babysitting. When my kids were young, we aimed for an hour of formal school a day, sometimes split up into two sessions. It always included reading and math, and then social studies, science and art, PE etc. were much more ad hoc. Sometimes they weren’t done, and sometimes they took the whole day when the kids got really into something. But we tended to do our 30 minutes each of both reading and math and then one or two other things. We went on LOTS of field trips, and lots of group activities and outside time. The world really was their classroom. It was a lot of fun most days.
I started noticing a few things that would have gotten my kids labeled in school. As a trained special ed teacher, I have a bit of an eye for such things, but I also noticed that at home, they were almost irrelevant. Tiny adjustments took care of most of these things. I could tell early on that Naim, were he in school, would likely get identified as having a reading disability and possibly a working memory/executive function disability. Aaron possibly would have been identified as ADHD or autistic (which they would have labeled “high functioning” autism). There were a couple of minor things that were ‘a little off’ about my precious twinnies. Maybe it was due to the prematurity, maybe it was genetic. Naim seemed to be a lot like my dad, who had some the same learning disabilities. Aaron’s bio dad and bio siblings seemed to have a touch of neurodiversity running through them. But as homeschoolers, it really didn’t matter. We had the time and space to work things out for the most part.
Dyslexia is a print disability, just like blindness. As a blind parent, I dealt with Naim’s dyslexia by teaching him to use blind people strategies. I taught him VoiceOver on the computer. I hooked him up with Bookshare, I made it so he could read his math story problems outloud and see if he understood them. I also taught him to read. I tried the Orton Gillingham method, but it confused him more. He just needed lots of phonics repetition. Enough so that information passed from his working memory to his long term memory. He also struggled to copy things in handwriting. So, I taught him to type, and saved the copy work for things like math. Naim never really got behind in anything except maybe reading, if you really care that your kid reads at 6 instead of 12.
Aaron’s issues were a bit harder to define and not something that I fully realized until years later. Aaron has never had any trouble academically. Aaron starting identifying as female when she was 15, but seemed to be a typical boy as a child. She excelled at building and following printed directions, had an excellent sense of direction, learned to read without me really even working that hard with her, and had good hand-eye coordination and and eye for artistic and aesthetic things. She could also be incredibly destructive. She would tear apart stuff just to see how it works. She got a knife and stabbed my couch just to see what was in it. She would deconstruct the toaster in 3 minutes. It was hard to turn away from her very long. I started locking stuff up in a cupboard with a padlock. At three, she disassembled the entire locking mechanism to get into the cupboard. There was never enough places “up high” or “locked away” for Aaron. At the time, I didn’t see it as neurodiversity, just high energy and creativity. Although frustrating at times, we dealt with it as it came.
When the kids were to enter fourth grade, I decided they needed to go to public school. They were doing ok, but I wasn’t. Looking back, I think I was just burnt out. My husband had lost his job that year and we started a new company that was slowly ramping up, but not creating a lot of income yet. I was homeschooling, working 2 part time jobs, plus work on the company to try to make ends meet. I needed for something to give, so I decided that the twins could go to school. In May of that year, I walked in to our local public school, the same one I’d visited before, and signed them up to start in the fall.
The administrators there talked to me about my kids and what their educational experiences had been up to that time. They were very concerned that my kids had never been in the classroom before. They thought they wouldn’t know how to line up, to come when the whistle blows, to be quiet in their seats. There was a lot of not at all veiled prejudice about their homeschool status. I said they had been in classrooms. At VH, at the science museum, and church Sunday school, at Saturday academy and zoo camp. They knew how to line up, follow directions, etc. MY concern was about Naim. Naim was grade level in everything but reading. He used VoiceOver for science and social studies. He used the computer for some his written work. I did not want him to not be able to keep up in stuff because he was a slow reader. It wasn’t so much about “keeping up” per se, I just didn’t want him to get the idea that he was stupid when he wasn’t. I asked what could be done, could we do an IEP? I expected the process to start, but they said that he would need to be there at least a year and show that he was failing before they could start an IEP. I thought that was ridiculous. I had already had Naim tested and also he had done the state required standardized tests for homeschoolers. It wasn’t like data wasn’t available. But they said they needed to take A YEAR for him to fail before they would make a move for an IEP. I asked if he could be informally accommodated or could we do a 504 plan? They said there would be 36 kids in his class, there was no means to informally accommodate him. The thought of all the kids reading in science and my kid just sitting there bored as I had done so much of my schooling because I couldn’t see was not something I wanted to waste year of his life on. I walked out knowing that I could not justify putting Naim in public school.
But I left Aaron in, and in the one semester Aaron was in public school, she became unrecognizable as the joyful kid I had at home. I was called constantly to the school, not because she was causing a disruption, not because she was hitting a kid or being mean to the teacher, but because she was “doing her own thing.” I get that some of this was probably a period of adjustment to public school and a classroom with 37 students. I thought it could have worked itself out. But the teacher was calling me constantly. Aaron developed this level of anxiety and was sliding under the desk and just zoning out. She had been at VH, at camps and other classes, and we had been able to work things out for her, but here, they just called me and wanted me to what???? I didn’t really know. I could tell her to listen to the teacher, try her best, hang in and it would get easier, but they quit on her. They would just call me and have me come there and then tell me that they didn’t like her handwriting (an admitted teaching weakness of mine since I am blind. I had them do most things on the computer so I could read it. With my younger child, I have now developed other methods to having him practice handwriting that I can’t see. But Aaron and Naim probably had less than average experience with handwriting.) I don’t have an problem admitting that I was not a perfect teacher and that my kids might have gaps. But the teacher would just tell me, I don’t like her handwriting. ….OK. What would you like me to do about this? Can you not work with her a little more on it? Aren’t you the teacher? I am willing to help, sure, but offer me something specific to do then? Same with math. Aaron has never had difficulty with math. Ever. But all of the sudden, she didn’t get the math. And there was no book that I could get off Learning Ally or anything, it was just worksheets I couldn’t see. So I couldn’t easily help her in math. I lost all control over having an accessible curriculum. I felt like, ok, you aren’t going to teach her, you just want me to teach her at home. Which is really HOMESCHOOLING, and what I was doing anyway. I didn’t blame the teacher entirely, I just thought she had too many kids. But she called me constantly and offered me nothing, just that I should work with Aaron at home. Ok, putting Aaron in school was turning out to be much more work than homeschooling, and it was less effective, and she was very unhappy. But since her grades were ok, she was doing good or average in everything, they said she couldn’t get evaluated for any services. I was on my own. I felt like the teachers and staff gave up on her for problems that I thought were relatively minor and could have been solved, but by the end, they practically told me that they weren’t going to do anything, and I had to get my kid out from under the table on a daily basis.
(It was Naim that had the final straw with it and told me we should take Aaron out of public school. We went one day to have lunch with Aaron and watch a little recorder recital her music class was doing. They gave us 7 minutes to eat. And halfway through, they made us gather all of our stuff up and switch tables so they could wash the table we were on. They apparently did this every day. Naim, who highly prioritizes eating, was APPALLED!!! Barely 7 minutes for lunch and maybe 5-10 for recess and you had to MOVE TABLES? This was sacrilege to Naim.)
I was pissed off. Because it felt like I no longer had a choice to homeschool my kids, I HAD to homeschool my kids. And furthermore, the school was pretty much counting on me to homeschool my kids since I had already done it so they weren’t going to work with my kids on the few minor things they needed to work on. When I was in teacher training with special ed kids with complex disabilities, people said my students were just too disabled to gain benefit from the regular classroom. But my kids were getting As and Bs and they didn’t have significant disabilities and behavior problems and there STILL was no benefit to public school for them. My kids are not perfect but compared to the variety of kids that end up in public school, they were easy. They always showed up, they never mouthed off, they followed directions and were relatively quiet, they did most of their work, they had pretty good grades, but because my kid slid under the desk when she didn’t understand something and my other kid had the pretty much easiest learning disability there is, they weren’t going to do anything to make it work for them. Why? because the fourth grade teacher is one adult with 37 very different and needy kids. And she was under tremendous pressure to do things a certain way, get testing done, and get kids from point A to B in a certain time frame by the school. As a broken clock is right twice a day, so will there be a handful of kids that public school does well for. All the others just fall though the cracks of this assembly line education. As I had said before, if it doesn’t work and isn’t good for the most disabled kids, its probably not really that great for the rest of the kids either.
My compromise for my overworked situation and having to pull out a couple of kids from public school was that I put them in a (public) hybrid online/inperson program. And they did a version of this for the next 3 years. They attended the in person classes once or twice a week, and took some of the online classes. It worked ok, but here is where I found the third group of homeschoolers, the public school exiles. Most again, were really nice kids that might have had some minor issues in public school but they were blown so out of proportion or their needs weren’t being met so here they were. Even though these teachers were in the same district as the neighborhood public school, and they had a whole small school of mostly public school exiles, they did a better job being flexible and actually teaching these kids. The ratios were much lower, and the rules were a LOT more flexible. The kids were only required to do what they signed up for and could do it in a bunch of different ways. For me and the kids, the hybrid online school was not as fun as what we used to do, but it wasn’t bad, and it left me more time to work. It goes to show that public school does not HAVE to be this way just because it is public school.
So, that was when homeschooling became concrete for me and we became a homeschooling family. Homeschooling is a lifestyle choice that affects the whole family, and it is hard to parse it out as “just” about education. but that is how I got there and how I learned that public school made us become homeschoolers (pushed us to practically against my will) more than we chose to be homeschoolers on our own. Oh, it was both, I suppose. But I don’t regret it, and it has mostly been a great decision for my family.
Currently, Naim and Aaron are enrolled in Baker Early College, which facilitates high school kids to attend their local community college and earn credits for both high school and college. They are 11th graders and are looking at colleges to transfer to in the next year or two.
Aaron’s neurodiversity became more apparent as she got older, and she struggled with her gender identity for a while until coming out as female a couple of years ago. Trans issues are not something I feel like I am an expert on, but my goal has always been for her to feel safe and loved in our home and community so she can grow into whoever she wants to be. She has some autistic traits, like being sensitive to loud noises and visuals, taking things very literally and being very exacting in what she does, which can mean that she struggles with anxiety. But she has made huge progress and had the time to just “be” (with a little help from the pandemic.) She has a B average at school, loves art and history, and is a bit of an academic She has executed projects like starting an online streaming collaborative and building Minecraft servers. She is currently in a program where her and a group of other students are building an airplane. She has a dry wit and is the family baker, where she is always pushing us to try new, exotic desserts.
Naim, also a junior in the dual enrollment program, is very proud of his 3.96 GPA. He has a 504 plan, which he didn’t need to fail for a year to get, and still uses print disability accommodations in a lot of his work. He is an admitted policy wonk. He has interned in the county Democratic Party office, a tax accountant office and the local city government. He holds an officer position for a. youth led advisory group to the city council and works at a fast food restaurant. He loves improv and can always make us laugh. He has participated in mock trial and model United Nations through VH.
They both, along with my 12 year old who I still homeschool, still attend classes at Village Home.
Of the 5 children in my blended family, the three I predominantly raised were largely homeschooled. As the two oldest of these are getting ready to head to college in the next year or two, I’ve been reflecting on the whole experience and how it turned out. What worked and what didn’t, and what I can do with it all. My youngest will likely homeschool with me for 1-2 more years, and then I have already decided that I will not homeschool him for high school, but will give him a list of options that he can choose from. One of these will be, and has always been public school.
When people ask me what made me decide to homeschool, it is a complex answer. And it is also a decision that is ongoing. Every year, we asked the kids (and I asked myself) whether we still wanted to homeschool. There is not a simple answer. Homeschooling is a lifestyle choice beyond an educational choice and it is something that has to be an overall good for everyone in the family. I get so many questions about homeschooling that I thought it would be a good time to write a series about my experiences in a homeschool family.
I can say a couple of things right off the bat. I did not homeschool for any sort of religious reason. I am not a quiverful, young earth, dinosaurs roamed alongside Jesus person or anything. I am not afraid of anything my kids would have learned in public school.
I can also say that I am a supporter of public education as a concept. I think all kids have the right to a free public education and I realize that not all parents can or want to homeschool. I don’t hate teachers or administrators. I think most of the time, they are well intentioned and they work hard and care. I think they are also under tremendous pressure and in an almost impossible situation because of lack of support, political forces gone out of hand and outdated methodologies. But I don’t begrudge any teacher or parent who works within the public schools. I just couldn’t do it myself.
If I could pinpoint the moment I decided to homeschool, I have to go back a long ways. It was actually a time when homeschooling wasn’t even on my radar. I wasn’t even a parent. I did not say, “ok, homeschooling it is!” What I did say (inside my head) while sitting in the middle of a school meeting in my capacity as a teacher, was “this whole thing is fucking bullshit.”
I was in grad school training to become a teacher at the time. I was sitting in a tiny student chair, with another student teacher, a classroom teacher, a special ed teacher, and my university faculty advisor around a tiny table in a classroom I had just spent yet another day in the classroom watching everything go wrong. My faculty advisor was scolding the group of us. She said we didn’t have enough energy to do what needed to be done for our students. And she was right. There was not enough energy, time, opportunity, support, tools, resources, or good will among us to our jobs effectively. I was probably 25 years old, and already I saw that none of us had what it took to make students successful in this setting. And all of the sudden, as I sat quietly listening to the only person who had not been there that day tell us how we couldn’t cut it, I had almost a sort of out of body experience. I mean, not literally, just that I suddenly was able to grasp this big picture perspective where I could see the whole education system laid out before me, and I saw that it was wrong. Very wrong. And there was nothing any one of us could do in that room to fix it from where we were. We could not get there from here.
But let’s back up a ways, first. Before I tell you this next little story, please keep in mind that I was ages about 7-10 years old in it. Looking back, it is obvious I come off as an obnoxious little brat. I realize that and realize that most of my assumptions about my two first “students” are not based on anything realistic. Both of these two “students” of mine grew up to become well-educated, well-adjusted, career-having, nice guys.
I saw myself as a teacher since I was 7 years old and started taking care of a baby I will call Jack. He was my babysitter’s nephew, and she was his real caregiver even though I fancied him as my baby. I fed Jack, played with him, diapered him, rocked him to sleep, taught him to walk and talk, and spent hours with him teaching him all kinds of things. Of course he had his mother and father and other family and my babysitter, too. But to me, I was his main influence and I taught him everything. He was a smart, talkative and outgoing kid.
There was another little boy, a cousin of mine, who was nearly the exact same age as Jack. Let’s call this little guy Arnold. I only saw Arnold on occasion and I could tell that he was not developing as quickly as Jack. My 7 year old assumption was that this was because he didn’t have someone like me to teach him everything. I believe Arnold went to a daycare setting, too. When Jack and Arnold were about 2, I noticed that my Jack could walk, talk, jump, sing his alphabet, say his colors and numbers, and all kinds of little things like that. Arnold could walk, but he was very quiet and so if he knew these things, I never saw it. I plotted to help Arnold by showing my aunt the issue and how much Arnold needed my help.
I got my mom to invite both Jack and my aunt and Arnold to a trip to the zoo. And then as Jack ran around talking to everyone and identifying all the animals and Arnold…did not, I campaigned and pressured my aunt to let me be Arnold’s teacher and I could do for him what I did for Jack. She just needed to bring him to my house a few times a week and I would make sure he caught up to Jack. Because look! Look at all the things Jack can do that your Arnold cannot! See the problem? See? See?
I was surely beyond obnoxious. And she did not take me up on my offer to “catch Arnold up to Jack.” But she did take him for an evaluation and he did go to some kind of developmental kindergarten program, so my work there was done. (Clasps hands together, self righteously). I was a teacher! I educated Jack and got Arnold to an education.
(Of course, I am sure there were many things going on here that had nothing to do with me. I probably had little to do with either Jack’s or Arnold’s early childhood education. But that is how I saw it in my mind. I valued education from a young age and I thought I was rather good at providing it.)
So, I played school with the neighbor kids and thought I might be a teacher for a long time. But my own educational experiences were cluing me in to some of the problems in a free, appropriate public education.
When I went to Kindergarten, it was 1975. The year that PL 94-142, the precursor to the Individuals with Disabilities Education Act (IDEA) became law. For the first time, kids with disabilities had a right to go to school and receive a free, appropriate public education (or FAPE as it came to be known). By the time I was in 3rd grade, I had an IEP, large print books, a teacher for the visually impaired that came to see me twice a week, and my own table in the back of the classroom where I had magnifiers and ditto filters and bookshelves for my huge books. My teacher for the blind would make me do eye exercises and trace mazes and track white marbles on black paper and black marbles on white paper and other such mundane and pointless tasks.
It all seemed like it had nothing to do with me. At the time, and as the years went on, it seemed like these expert educators thought I could do things I struggled with and couldn’t do things that were easy for me. No one really ever asked me what I needed in the first place.
In 6th grade, I moved to a new district and my very thick, weird glasses that were mostly ignored in my old district were suddenly a big deal. I was relentlessly bullied. Ironically, at this school…I also had no IEP, no large print books, no table in the back, no marble exercises. But I was put into the dreaded “Friendship Group.”
The first time I went to Friendship Group I got how stupid it was. It was run by the guidance counselor and it was me, the fat girl, the girl with spina bifida, the mousy, nonathletic boy, the kid that smelled like pee in old soiled clothes that probably had a nightmare family life. Oh, I see, I thought. It’s all the kids that everyone bullies. And the counselor thinks the answer is that there is something wrong with us, not them. That WE are the problem. We were determined to need “friendship skills.” But, I had never seen anyone in this group be mean to anyone before. Although they were all kind of quiet and unassuming in that way that the kid that nobody likes has to be to survive, they were all nice kids. The counselor made us watch filmstrips about “warm fuzzies” and “cold pricklies” and got some popular kid–one of our tormentors as a matter of fact–to be our “peer model.” She relished the role. She was supposed to give us points to win prizes if she saw us giving other kids “warm fuzzies” and take points away if she saw us giving people “cold pricklies.” Instead, she just used her power as a reign of terror to humiliate us and our rates of bullying only increased.
Even then, at age 12, I thought the guidance counselor was about as stupid as a box of rocks and I could do better if I were her. For one thing, I would get the bullies into friendship group-as punishment! And I would do things to elevate the status of the different kids and give them opportunities to shine. I would quite glorifying the mean kids and giving all the opportunities to them. I would listen to the kids to see who needed help from bullying and who needed to be stopped from being a bully. I started to see how I could be a better teacher than a lot of my own teachers.
I thought of being a teacher, but I also thought of being a lawyer, or a journalist, or an occupational therapist or nurse. By the time I got to high school, I could hold my own as far as bullies go, but I still struggled academically in math and science. This was almost 100% because I had difficulty seeing and hearing the teacher and the lessons. But I got a reputation, like so many other special ed kids, as someone with “lots of ability who just doesn’t apply myself.” Either that or that I “just did not have a mind for science and math.”
So, when looking at college majors, my mom would literally look at the math and science requirements in the catalogs and see which required the least amount of math and science. The requirements that were always the easiest were teaching majors. So, she told me to major in education and become a teacher. Thinking I was too dumb for other majors, I agreed. (I have since discovered, when science and math are presented accessibly to me, I understand it just fine.)
At the University of Nebraska, I double majored in elementary and special education. Elementary ed classes were a joke. There wasn’t much to them. There was some mildly useful classes in educational and developmental psychology, but the methods classes were practically like going back to 3rd grade again. We would each just teach each other a 3rd grade level lesson. And then we were supposed to save these lesson plans “for our files.” The idea being, we would build files of content to have on hand for when we had our own classroom. But when we would go in to the schools for student teaching, I could see that the files we worked for years to develop were going to be nearly useless. The curriculum was all strict and planned out for us. There were these overwrought teachers manuals provided by McGraw Hill or Pearsons that were scripted with everything you were supposed to do. The harder thing about teaching was classroom management and all the procedural stuff you had to do. I could see that school was more about babysitting that really teaching like I used to teach baby Jack, where I would get down on the floor with him and find ways to teach him new things as we played.
Special ed made a bit more sense to me, and the classes were harder and more interesting. There I learned statistics and standardized tests and ceilings and basals and some sign language and some augmentative communication and things like that. It seemed more relevant and I met more interesting people. I also noticed that no one wanted to hire a visually impaired person to teach in typical classrooms, but I had developed a business of babysitting for kids with multiple disabilities and I found these kids had lots of personality and were very enjoyable. I was always amused at the school districts who did not want to hire me for typical ed, but who were just fine for me to teach their toughest, most challenging kids that no one else wanted to teach. So when I got an opportunity to go to get a graduate degree in education of students with “severe and profound disabilities and deafblindness”with a good financial aid package and a work study built in, I jumped at the chance.
The University of Kansas had one of the top special ed programs in the country. My professors were good hearted and supportive and progressive. They promoted the concept of “full inclusion” where all kids should be mainstreamed in the classroom pretty much full time. Even our kids with “severe and profound” disabilities. This was ahead of its time, as our kids had traditionally been put in special schools and self-contained classrooms. So, a student who used a wheelchair and had cognitive disabilities would go to math class and might work on, say passing out test papers or sorting and counting while the rest of the class worked on long division. The kid would be integrated throughout the day, not segregated away, unseen by the masses. It was supposed to be good for everyone. And for some kids in some situations, it was.
A great thing about the program was that we were in the schools every semester for several hours a week. But that also lead to a great disconnect. What we talked about in class; all these wonderful ways we could include kids with pretty significant and complex disabilities into the typical classroom was nearly impossible to implement in the real classroom. For one thing, you had to have everyone on board. The classroom teacher, the parents, the one-on-one paraprofessional, the students, the special ed staff, the administrators, even the janitors and admin staff had to buy in to this. As a part-time student teacher, we had almost no clout. People would literally laugh us out of the room at how our plans did not fit their reality. Yes, much of this was just pure ablism. They had very low expectations for the students and didn’t see the point. And it was our job to change their hearts and minds about this. But almost none of our carefully thought out and task analyzed plans got implemented when we weren’t there, and not too much of it got implemented when we were there. But still, as student teachers, we were expected to carry them out and enlighten all of the stakeholders to our vision of beautiful and meaningful full inclusion.
As a visibly disabled person at this point, I had years of experience with trying to change hearts and minds and combat ablism and low expectations. I knew it took something more like decades or generations, not semesters to get some people on board. And as a person who had spent many a chemistry or algebra class sitting completely unengaged, doing nothing, staring into space because I could neither see nor hear the classroom goings on, I knew how demoralizing and boring it must be for these kids to be in this environment when absolutely nothing about it was made for them. They did not have generations, decades, or even semesters. They needed more intense education, not less. Sitting around, waiting for someone to find little places to include them in little tasks, was largely a waste of their time.
As for the teachers, most especially the classroom teacher but also the actual special ed teacher, I saw how impossible their task was. The teacher had too many kids and too many things to get done to have to wait the extra time it took for a student with CP to pass out pencils. It’s not that they didn’t care, they just couldn’t have time to care. Special ed teachers saw them for minutes a week as they dashed all over the district to see students and spent hours and hours in meetings and doing mandated IEP paperwork. The front line person was always the paraeducator, a person who had almost no training and who got paid just above minimum wage. It was often a transitional job and people didn’t stay long. Especially the good ones that really cared. They went back to school or got moved out or went to a higher paying job. Many of them just tried to get through the day with as little conflict with the teachers or students as possible. They helped our kids get where they needed to be, they helped with their bathroom needs, feeding and needed medical procedures, behavior issues and disruptions, and lifting them in and out of wheelchairs, and other basic care. It could be a physically labor intensive job that tired people out. Educational goals often went by the wayside.
The day I sat on the little chair having my lightbulb moment, several things happened that made me uncomfortable. My job was to implement a calendar box system with a totally deafblind child that I will call Alfonso. This is where objects are used and exchanged to help develop language and routines. For example, before lunch, I might hand the student a spoon to symbolize that it is lunch time. Or he might hand me a spoon to say he was hungry. Alfonso’s one on one para was one of those who didn’t really believe he could do anything and just wanted to get through the day. Alfonso had almost no formal, symbolic language. He was about 9 and mostly communicated in tantrums and rolling around on the floor. He also wasn’t too happy about changes in his routine that he did not understand, so as a new person coming in, I was a threat and likely to cause a tantrum. His para really just wanted me to stay the hell away so that she could avoid dealing with a tantrum.
I tried to give them space and just talk to the para and make suggestions as to what she could do with him, but she wasn’t really interested in anything I had to say. So, I started getting pulled in to the rest of the classroom. When teachers have too many kids to deal with, they are happy to have any adult around to pick up some of the need and that is what was happening in this classroom. I worked more with the other kids than I worked with Alfonso. I helped with math problems, I helped with spelling words. The classroom teacher would always thank me profusely.
On the day of the meeting, I watched as the kids were all sitting on the floor for a group activity. They were supposed to stay within the boundaries of a rug. Alfonso’s para had not managed to wrestle him over to the rug, and it would have been a loud wrestling match, so they sat together on the floor, off to the side. The para was flipping through a clothing catalog trying to catch a little break after a very physical PT session, while Alfonso was laying on his back half under a desk, rocking back and forth, self-stimming by pressing his fingers into his eyes and banging his elbows into the legs of the desk. With each bang, he would vocalize and giggle loudly. The classroom teacher ignored it, but she often had to repeat herself so she could be heard above his yells and giggles. When I had approached Alfonso and his para, she shot me a look and told me to let him be for a few minutes. Not wanting to argue, I complied. She had had enough of me and my silly lesson plans for Alfonso, who had just been wrestled through a session with a demanding physical therapist. She made it clear to me that I was just a guest there.
A girl in the circle was constantly getting poked by some boy, and she moved out of the boundary of the rug. I had helped her earlier that day redo a math worksheet that had almost every problem wrong. The classroom teacher stopped what she was doing and told her to get back on the rug. She didn’t move. She started protesting and the teacher interrupted her and told her to get back on the rug a second time. Alfonso was rocking, banging, yelling and laughing loudly. The room got tense, and it just felt like every one in the room was on edge and exasperated. Every time the teacher or the girl started to talk, it was punctuated by Alfonso’s roll, bash, loud giggle.
“Alfonso doesn’t have to sit on the rug! Why should I?” demanded the girl.
Roll, crash, yell, giggle.
With almost clenched teach the teacher said “Get. On. The. Rug. NOW!”
The girl sort of froze. She locked eyes with the teacher, it was a standoff. The class was silent.
Roll, crash, yell, giggle.
“Would it be ok if she sat next to me for right now?” I suggested, I was sitting just off the rug, Alfonso and his para were behind me. I was trying to give the girl a graceful out and de-escalate the situation. The teacher made a slight nod and the girl slowly scooted over to me. I gave her a little pat on the back as she choked back a few tears. The teacher took a small breath and continued on with her lesson. Alfonso continued to roll around and self-stim. Well, I thought, maybe I did something for someone today. But certainly not Alfonso.
These types of situations were more common than I think the KU professor and the special ed teacher really understood. The professor was an idealist, and we need those in the world. She was applying a high standard and trying to hold us to the expectation of what should be. The special ed teacher had no idea of the pressure the classroom teacher really had an impossible situation. She just wanted it all to be in compliance on paper. Don’t worry her about these problems, she has 40 other students across the district with problems. The para, who was a classified employee and not at this after hours meeting, was a dud. Or maybe she was burnt out of being kicked and hit all day long by a kid who was under stimulated and did nothing all day that had any meaning to him except maybe lunch. We were all failing. Full inclusion was a joke here, and we all knew it, but had to pretend we didn’t.
I kept thinking about the girl student, who I’d spent a lot of time with that day. She was not a special ed student, but she was also struggling to get her needs met. And then the obvious hit me. This situation doesn’t really meet anyone’s needs. Alfonso is wasting away here. He is not getting what he needs, but because we don’t want to segregate him, we go through the motions of full inclusion with him as he wastes away his formative years in this setting that is totally wrong for him. The one supposed expert in his care only sees him for minutes a semester and spends more time complying with paperwork regulations than teaching. The other kids are not getting their needs met by their teacher because she has too much to do, and she won’t say it aloud but Alfonso is just one more distraction that is falling through the cracks. He is physically present, but he is not really her student.
We can’t get there from here.
We can’t shove our special ed kids into this flawed system. No one should be in this flawed system, so why are we trying? When I say Alfonso doesn’t belong in that classroom, I am not saying that he should be segregated into a special classroom or school, I am saying that NO ONE belongs in that classroom. It doesn’t work, in different degrees, for any of them.
On the KU campus at that time, the special ed department where I worked was clear across campus from the regular ed department. There was little interaction between the two departments. We weren’t even included and integrated on campus yet we were trying to integrate out in these schools. I would sometimes meet fellow student teachers from typical ed out in the schools and I would ask them what they learn about full inclusion and I would get “what do you mean by full inclusion?” Typical ed wasn’t ready for us. And why should they be? The entire model was based on a one size fits most approach to education. The ones it didn’t fit, by definition fell into special education. And we are supposed to develop an Individualized Education Program and ram that into a world of Common Core, Standardized, Tracked and Age-based automated education. The whole idea of special education is an oxymoron.
Why aren’t the regular ed folks trying to be more like us? Why are we ramming our square pegs into those unforgiving razor edged, round holes? This is abusive! Why don’t they change their shape for us? They already know the round hole approach is ireperably flawed. Why aren’t they doing what we are doing and coming together with us, the experts in individualized and differentiated education, instead of acting like we don’t exist? The whole thing is just wrong.
Alfonso needed out of that classroom, not to be segregated, but to be appreciated. I thought about what I would do if Alfonso was my kid, and I thought. I’d take him home, or at least to a nice, homey space. And I would just have language language language everywhere. Calendar boxes, sign language, braille, musical vibrations, routines, free time, lots of things to do and feel, connection, continuity and love. And that is more or less a version of what the other kids needed, too. Because needs aren’t special, they just sometimes use different means. I’d bring Little-Girl-Who-Won’t-Sit-On-the-Rug with me, too. And I would bring maybe two or three others, and I would get to know them. and I would give them exactly what each of them needs. I would listen to find out what that is, I would see what their strengths are and have them help each other out when they could. And I would give them a custom education that was a perfect fit for each of them. Just like I did for Jack all those years ago, and numerous other children through the years. Because this, whatever this is, this is not teaching. This was mass childcare. This was warehousing. We had taken disabled kids out of the warehousing institutions of old, and we had just put them into a bigger, slightly more benevolent institution with a whole, diverse bunch of other kids.
Little did I know, this idea I had was already being done and studied across the world, and it was called homeschooling.
My fingers pounded on the keyboard angrily as tears of frustration ran down my face. A call service for an organ transplant coordinator had just hung up on me for the second time that day. This was after weeks of trying to get in touch with her on MyChart and finding that my message thread was expired. I can’t initiate conversations with her, she can only initiate them with me. After 30 days, the thread is gone. When I do get a chance to communicate that way, several items have accumulated, and I rush to get them all in. But there is a character limit. So I spend an hour cutting back niceties and prioritizing, letting some things fall to the wayside. When I send in my carefully crafted, concise list of questions, days may go by before I receive an answer and then only one of my 3 questions is addressed and I start over again. (I once participated in a hilarious online discussion where autistic folks complained about how neurotypicals can only handle written communication in very small one-issue chunks and how they had to accommodate the “typicals” on this issue lest they think the autistic folks were mad at them. I related. Disabled people work nonstop to cater to the needs of the mainstream culture.)
Written communication is all I have, though. And I was not being given any consideration of this fact. At this moment, a question I needed answered for weeks went unanswered again and I was at the end of my rope. I felt helpless. I feared the inability of the medical profession to accommodate my communication needs was going to cause my premature death.
I am a Deafblind person with end stage kidney disease. I am biding my time carefully, waiting for a kidney transplant. I am also the co-owner of an assistive technology training company. Because of this, I am in a much better position than many other deafblind people with a chronic disease to communicate with medical staff. I have access to the latest and most advanced assistive technology. I am a relatively affluent and educated user of this tech. I am also lucky that my spouse and business partner is one of the most knowledgeable and prominent assistive technology experts in the country, so I have built-in assistive technology customer support at my beck and call nearly 24 hours a day. I have more braille displays, smart devices, and assistive tech software than I care to admit available to me. I am a strong believer and a constant user of assistive technology.
Yet, I couldn’t communicate with my medical providers.
My usual means for talking to most people was to use texting. I am a “blind first” Deafblind person. A rarity as most Deafblind people have Ushers Syndrome, which causes deafness at birth and diminishing vision later in life. I was born with Alport Syndrome, which causes diminishing vision, hearing and kidney function. So, I am not culturally Deaf. I know a rudimentary level of ASL, but I am very proficient in braille and in using digital braille displays. Although I have some vision and hearing, I am most comfortable with the written word via braille. Texting and emailing works for many things, as well as using the texting functions in apps like Uber and OneCapApp for captioning. This covers a lot of communication ground for me, but there is a wide communication abyss in the medical field. Part of this is due to the privacy regulations of HIPAA, which many medical professionals interpret as not being allowed to email or text. (Ironically, faxing is still a mainstay of medicine. As if your medical records sitting on the desk of some receptionist in the waiting room is somehow private.) When I was younger and had fewer medical needs, this was all a minor inconvenience, but now, I feared…this lack of accommodation could end up killing me.
So here I found myself, furiously crying and angrily pounding out a desperate email to Chad Ludwig, the Deaf director of Bridges Oregon, a nonprofit that advocates for the civil rights of Deaf and Deafblind folks. I wrote:
I am really frustrated right now, and I am looking for solutions for myself and thought about this program. I’m not sure if you know that I have kidney disease and am waiting for a kidney transplant. There is a lot of communicating I have to do in healthcare and healthcare has always presented a special challenge for me in regard to deafblind communication. There is no emailing or texting allowed due to HIPAA. I communicate a lot via MyChart and TTY relay. It sometimes works fine, but it sometimes just completely breaks down to the point where I really feel my health is compromised. MyChart only lets me initiate conversations with certain people so others don’t get my messages. There is a character limit and message threads expire after a few days. TTY relay has its problems in that people are afraid of it, hang up on it and don’t really want to talk a lot on it so I get incomplete information. I’ve also had some weird communication breakdowns on it. Once I was almost kicked out of the program because they said I told them that I refused to wear a mask. I don’t even remember being asked the question of whether I would or not (of course, I would.) Today, I tried to call a transplant coordinator using a Compilot (ALD that connects to my hearing aids) and She couldn’t hear me, then she called back, and my compilot wouldn’t pick up the signal, and its just been a big mess. I am very worried that I will miss a call to get a transplant because of some stupid communication issue and I will just get passed over.
A few years ago, Chad had asked me to make a public statement to the state legislators in support of a bill to provide Communication Facilitators to Deafblind folks to help them make phone calls. This is a live person who can act as an intervenor on behalf of Deafblind folks when using the telephone. Although the bill passed, a lot of people didn’t get it. When talking to others in the Assistive tech field about this bill, the first question they all asked is, “Why is that necessary? There are all kinds of tech solutions for this.” Putting aside for the moment that there are always going to be people who don’t have access to or can’t use assistive tech, this seems like a good point. There is plain texting like anyone does. There is video relay where an interpreter relays the signs and voice between deaf and hearing people over video. Text relay (sometimes called TTY), where a relay operator types out the voice for the deaf or deaf blind person and voices what is typed for a hearing caller is what I have come to use often. I read the text with a braille display, a device that turns what is written on a computer screen into braille. In a pinch, I will blue tooth my hearing aids to my phone to amplify the sound. It is not a great solution for me because I have to work extremely hard to hear the conversation anyway, and after a few minutes it becomes physically painful to my ears. I mostly use this for my dad, who is too old to not be easily confused by the other methods, but when all else fails, I will give it a try. But in the medical setting for me, it was all failing on a regular basis. Appointments took weeks to set up. Miscommunications occurred often. More times than not, I was just being ignored.
Assistive technology is fabulous. For those who do not communicate typically, it can be the bridge between us and the rest of the world. But I have come to find, it only works well if others–and by others, I mean the nondisabled…I mean YOU–are willing to be flexible enough to work with it. As I go around in my work and advocate for disabled folks to have access to assistive tech devices and software and to be trained to use them…I am starting to see that I am missing a huge piece of this. Assistive tech only works when they are also understood and valued by the nondisabled as well as the disabled. Assistive technology helps us to meet you halfway, but you have to come halfway to us. You have to do your part to include us by understanding how we do things. I don’t mean that you need to understand every little aspect of how to work a braille display with a speech reader and a TTY operator, but you do need to be open, curious, and flexible in working with us and our tech solutions. You have to work with us to work with you and make it work. You have to be more “Can Do” than a lot of you are. It can’t always be about your convenience and comfort all the time.
I see this inclusion gap in other areas besides healthcare. We have clients are offered jobs where they will need a screen reader to access the computer. My company’s role is to come in and install the software and provide customized scripting, if needed, to make the screen reader work at maximum efficiency for the employee. (And often our services are provided free to the employer through funding from a vocational rehabilitation or insurance agency.) This is a process that may take a few weeks. But often we run into employers who put up barrier after barrier to getting this (free!) service, that can not only help this employee but others in the future, and even customers! Companies won’t give us security clearance to install proven technology on their system, or they don’t want to wait for the scripting to be done. We also come in sometimes when an employer has updated software so the scripting has to also be updated. But rather than wait for a few hours’ work to get done for an experienced, loyal, and hard working employee, they dismiss the employee.
People expect assistive technology to just turn on and work perfectly, and that it will in effect make the person using it nondisabled. That is just not how it is. Many years ago, I told my new boss that I was in the middle of getting new hearing aids because my current aids were broken and to please be patient as I wouldn’t get them for a couple of weeks. He spent the time making comments like he was counting the minutes until I would no longer be hearing impaired. Seeing a need to adjust expectations, I explained to him that my new hearing aids would be an improvement, but I would still be deaf, and he knew I was deaf when he hired me. When I got my new aids, he was disappointed that they did not make me magically hearing. I still needed amplified phones. I still needed captioning for some meetings. And he still had to repeat things to me. Assistive technology is not a “Get Out of Accommodating Free” card. It is a means, but it does not let the nondisabled off the hook or get them out of a responsibility to provide disability accommodations.
As we have all learned a lot about remote work and video conferencing over the last few years, the use of assistive technology has opened a lot of doors for people with disabilities to participate. Live captioning on zoom calls has helped more Deaf people be included in work and social events that they have been historically left out of. But again, the tech is only as good as the people who accommodate the tech. In a zoom call that is captioned, the captions are never going to be as fast as the speaking. They also cannot transcribe 6 people talking over each other. In order for all people to be included, a meeting facilitator has to run a tight ship. There needs to be rules about only one person speaking at a time. Extra wait time needs to happen to that all people can catch up and comment or ask questions. If someone uses alternative/augmentative communication, there needs to be wait time for them to have a chance to have their voice heard. Yes, that may mean a few moments of awkward silence. Believe it or not, this won’t hurt you and you will get over it. The tech only works if the participants have an inclusive attitude.
Another classic example is website and app accessibility. If websites and apps are not developed following accessibility guidelines, people are left out. If your videos don’t have captions and transcripts, or if your buttons are all labeled “button” so a screen reader can’t discern any different between the functions of these buttons, if your forms are not formatted so the fields are labeled and people know where their name goes and where their address goes, you will lose people who can’t access your site.
In looking for a better solution for my health care issue, I ran across an app called AlloCare by CareDx. It is especially made app for transplant patients. It has a means to keep track of medications, test results, text communication with medical staff and other important functions. But I couldn’t even make an account on it. I got to an incorrectly coded checkbox that I had no way of checking with my braille display. And boom! The app has just excluded every single blind screen reader user. When I reached out to the company, they seemed receptive at first but also said they had to “check with legal” and then I never heard from them again. I still can’t use that app. There are doctors that are implanting insulin pumps in blind diabetics who can’t even use the apps to monitor and adjust the pump! An easy bit of debugging and adding a few accessibility features would make these devices accessible and life-saving, instead of a detriment to health.
Assistive tech is often expensive and takes diligent work and patience to learn and use. This is a burden that disabled folks take on and fight for because technology can be a godsend and open a world of possibilities. But skills and tech can only get us so far if others don’t participate in meeting us halfway and doing their part. I can have my TTY, computer and braille display all set up, but if I constantly get hung up on because people either don’t understand or are uncomfortable with TTY relay, or if they refuse to set a time with me to communicate (as I cannot just BE in constant vigil for your call in front of my computer, relay app open and hands at the ready on braille keyboard) then I am excluded and all the work I have done to get the proper tech and learn it is for nothing.
I always remind people that accommodations are not just special things for disabled people. Everything human-made is an accommodation for someone. When your employer provides you a chair, desk and computer with monitor, that is an accommodation. The fact that some of us need a screen reading software instead of a monitor is not a “special need,” it is a different accommodation to access the computer. A doctors office provides a building, a door and a seating area. All accommodations. By having an automatic door and a ramp, they have widened their net to accommodate more people. If a presenter provides a stack of slides on a projected screen, that is an accommodation. It is not that much more difficult to describe those slides and provide them as an email attachment ahead of time to a deafblind person. Nondisabled peole often balk at providing “special accommodations” for disabled people while ignoring the enormous amount of accommodations that are always ready for them without even having ask for them. This entitilement gets at the heart of the Diversity, Equity, and Inclusion that organizations say they believe in promoting. DEI takes work, and this work includes not only providing assistive technology solutions, but understanding them and participating in their success.
Chad Ludwig informed me that Bridges Oregon has just signed the contract for the Communication Facilitator program and hopes to have it running by late summer. I’m happy, but it seems like yet another (in this case, high cost and low tech) thing I have to manage to accommodate others. Even though I have all the assistive technology I need to communicate with people, their refusal to participate in my tech solutions mean that I will have to get a facilitation communicator when they become available in my state. I will have to forgo my privacy and find, hire and train a facilitator and organize and set aside time to work with them just to make phone calls. In the meantime, I finally asked my husband for an hour of help out of his day once a week; which equals lost wages when you own your own business. I got more done in one hour with him than I have gotten done using my assistive tech in the last 8 weeks. Just because people were willing to talk to him when he called them.
Maddeningly, I have yet to come up with a solution for the most important phone call I may ever receive. This is the call to tell me that an organ is available to me that will save my life. I will have less than 20 minutes to respond and an hour to get myself to the hospital. Of course, there are solutions. The tech is all there. Vibrating pagers, texting, etc. But pardon me for being absolutely paranoid that someone’s ignorance or refusal to deal with me on a TTY relay or someone talking on my behalf or hang up when I call them back. When I have expressed my concerns, I have just gotten shrugs. People don’t seem to understand that this isn’t just happening once in a while or just “by accident,” It is a systemic civil rights violation. It is baked into the policies, attitudes, regulations, and procedures of organizations and it is discriminatory. It is constant and pervasive enough that worrying that I will miss the organ call is very real. Working with people who use assistive technology is part of DEI, and it’s about you just as much as its about me.
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.
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.
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.”
Several years ago, I was hit by a car. I was walking on a sidewalk and stopped at a driveway that went into a Target store. A car pulled up and stopped. I assumed the driver was waiting for me to cross, so I indicated to my guide dog to move forward. When I was walking in front of the car, it accelerated in an attempt to turn into the oncoming traffic. Although the car was not moving at a very fast speed yet (I’m guessing maybe 5 miles an hour?), it knocked me and my guide dog underneath the car. I remember going down and the car rolling partially over me. I had dropped my guide dog’s harness handle, but still had hold of her leash. It was only due to my dog literally jumping up from under the car and immediately dragging me out of the way that I was not run over by the car or pushed out into oncoming traffic. Although the car lurched to a stop for a few seconds, it skidded away. Luckily, I only had minor bruises and aches and pains, but I will never forget the sheer strength and force and weight of that car as it rolled over me. Even at a very slow speed, my puny human body was no match for its power. Although I rarely am in a car, in my adult life, I have been in 5 traffic accidents, from fender benders to ones where the car was totaled and people were hospitalized. In the past year or two, I can think of many tragic accidents off the top of my head. My cousin was killed in a T-bone collision. A friend of mine was out jogging and was clipped and dragged several feet by a semi. She was in the ICU for weeks and required months of hospitalization and rehabilitation. Another friend of a friend was a pedestrian killed in an intersection. Another friend of a friend lost her parents and her brother was severely injured when they were hit while waiting for a tow truck to load up their car. A youtuber I follow had her entire family hit by a car. Her husband was killed, she and her two children had severe injuries. I’m sure you have these same stories. They are super common. We call them car “accidents.”
Although I understand in most cases, the driver doesn’t intend to hit or kill others and that is why we call them accidents, a true accident is something that is unavoidable, and we could foresee nothing could have been done to change the outcome. This isn’t really often the case with vehicle accidents. We really call them accidents because we have decided as a society that a level of injury and death is acceptable to us in exchange for the convenience of cars. When people die in car accidents, we shrug and say, that’s so sad and we go on and don’t question it much further than that. Sometimes a grieving family will lobby to get an intersection modified to be less dangerous. This often takes years of activism on their part. Although it may be impossible to prevent every single car-caused injury and fatality, car accidents are largely caused by policy decisions and how we interpret and enforce laws. This is especially true in the case of pedestrian and bicyclist fatalities. Sweden, and many other countries have implemented a program called “Vision Zero” that attempts to use policy and infrastructure to eliminate traffic fatalities. Through things like improving streets and intersections, traffic patterns, reducing speed limits, and eliminating dangerous rules meant to unsafely speed traffic along, they have reduced traffic fatalities from 36-60% (depending on the country). The basic premise of the program is that any fatality or injury is unacceptable and through policy and infrastructure the streets can be kept safe. This shows how there are really no (or very, very few) true car “accidents” when changes we can make impact safety so much.
According to the World Health Organization, There are over 1.3 million traffic fatalities a year. Car crashes are the leading cause of death in children in the United States, accounting for 20% of all childhood deaths. Safely maneuvering a 3000 pound vehicle at high speeds is something that takes skill and a certain mindset, but even though there are license requirements and tests, it is not very regulated and there are few consequences for the driver when crashes occur. Furthermore, decisions about roadways and traffic often lean to the side of getting vehicles moved through as swiftly as possible, not so much safety. Cars have become such an ingrained part of our society, hardly anyone loses a license permanently even after multiple traffic violations, arrests or fatalities. In this story, a drug impaired driver who repeatedly backed up and crashed into a building and was tazed in order to arrest him was banned from driving for only 24 hours. Although he may face further consequences when he goes to court, there is nothing stopping him from driving under the influence again. Our culture is so car-centric, that we choose to put dangerous drivers in cars rather than taking away driving privileges for fear that a person suspended from driving would risk his life spiraling out of control by losing access to job and health care. Not being able to drive should not ruin your life and make you unable to fully participate in society. To take away the privilege to drive should just take away the privilege to drive, nothing else. And many, many people do not deserve this privilege. Driving is not intrinsic to society naturally. We went hundreds of thousands of years without motorized vehicles. We have developed society this way.
Driving is a privilege, as compared to walking, which is a fundamental function of human mobility and thus should be protected as a human right. But over the years, walking (and other more low-tech, less impactful and natural alternatives such as biking and utilizing animals) have slowly lost priority and privilege for the sake of the almighty car. The reason pedestrians and cyclists make up around half of car crash fatalities when they aren’t even using cars is due to the infrastructure we have built that prioritized vehicles over all else and pushed out our basic right to walk safely. The fact that I, as a blind person or even just a pedestrian, have to navigate parking lots, stroads (very busy multilane streets with traffic signals and very little to no biking and pedestrian infrastructure), walk streets with no sidewalks, walk miles out of my way so that I may get to the one safe place to cross a highway has pushed our most basic inherent right to mobility to the slimmest margins of society. I often can’t go to a fast food drive-thru, even when the indoor area is closed. I can’t go get a Covid test or a vaccine at certain car only sites. I can’t go to the drive thru 24-hour pharmacy when the main store is closed. I sometimes have gotten honked at and yelled at when I am walking down a street with no sidewalk as if I’m the one who shouldn’t be there. Pedestrians (which is all of us) should have fundamental right of movement, low impact transit methods like bicycles and even horseback should be next, public transit that is for the greater good after that and then people’s individual cars should be dead last. Car infrastructure should be the afterthought to pedestrian right of ways, not the other way around. Every single day, pedestrians make way for cars. This is not the way it should be. People should not come in last place to huge vehicles that can kill people at whim.
Imagine, if you will, a better world…
It really doesn’t have to be like this. We have been bamboozled by car and oil companies. Car companies bought up public transportation that was widely available in the 40s and 50s, only to destroy it so people would need to buy more cars. They lobbied for more highways and roads at the expense of safety, freedom, and the ecology. They led PR campaigns to slowly make walking more and more illegal and looked down upon, like when they convinced municipalities to pass “jaywalking laws” which limited where pedestrians were allowed to simple walk for the first time in human history. They created a world that convinced you that you need to go everywhere in a car that you pay thousands upon thousands of dollars to run and maintain, that adversely affects your health, and that is helping to ruin the planet, all while stripping the rights of the homeless, disabled, and low-income folks who are excluded from car culture.
And as a lifelong nondriver, I get it. I get how hard it is to consider life without a car. Every single day, I have to negotiate this weird outcast roll I have in society as a nondriver. I’ve lost job opportunities, social opportunities, and access to health care because I can’t drive. I spend hours getting places other people can get in 20 minutes. I have to risk my life to be able to get to the places I have to go to. It is very hard to be a nondriver in the status quo. It may be hard for you to imagine how you could possibly do it.
But this is because it has all been set up for cars. These are choices that have been made, not inherent realities. When my kids were little and drew pictures, they would imagine our neighborhood without roads, driveways, cars and alleyways. They would draw gardens and playgrounds and waterslides and little libraries in the road outside our house. In the big parking lots nearby, they would draw skating rinks and bike ramps. As a gardener, I would imagine garden plots and small animals that would mow and improve the soil like chickens and goats. I imagine walkable corner stores and services scattered in every neighborhood. I imagine improved transit that everyone could easily walk to and that would come so frequently, you wouldn’t even need to look at a schedule. I quite enjoy riding transit and meeting and talking to people on transit. If I am in a city where I have to rely on car rides. I feel boxed in and closed off from the world. I imagine that neighbors know each other and help each other out because they actually get out of their vehicle bubble and know each other. Transit could be so integrated that there would not be transit deserts anywhere in any city, and different neighborhoods would have more access to each other. People think public transit is such an awful thing now because it is last priority and left for the people who society treats as last priority. When more people utilize public transit, it improves (unlike when more people are on the road, which just causes more traffic and pollution.) Pedestrian and bicycle infrastructure could be improved. Equipment to haul larger parcels/groceries could be improved. People would get the chance to walk or bike so much more and be in such better shape that our collective public health would improve dramatically, not to mention improved air quality. Intercity freight train lines and processes could be improved, and distribution to small neighborhood stores (rather than door to door delivery) would cut down on transport of goods, as would more manufacturing and growing locally and buying locally. I am not an urban planner, nor am I an expert on things like supply chains and that sort of thing. I know I don’t have all the answers. But I know that as a collective society, we do. We don’t have to always default to the almighty vehicle at all costs, there are other ways. We don’t even see the methods and advantages because we have been swimming in this world where car is king. There is a better way.
And if you are going to play the “disabled” card…
Whenever I bring up this issue, I inevitably get the “what about the disabled?” question. People say we have to have car infrastructure because some disabled people cannot walk or cycle long distances. If you are an actual disable person asking this question…fair enough, and I will get to you in just a second. But for everyone else…I have this to say:
Oh My God, Shut the Fuck Up!
I am rolling my eyes at you SO HARD right now. You are all of the sudden very concerned about the disabled who need close proximity transit, are you? Uh huh. I totally believe you! I know that you are so very concerned about the disabled! So concerned that you park in their spots, you don’t provide curb cuts in your streets, and you kill them when they are pedestrians because you NEED to turn right on red or have that extra space that sidewalks and bike lanes take up. You lobby against accessible pedestrian traffic lights, against accessible buses and taxis, against having to lift one finger to accommodate the disabled. Except when doing so benefits your habits. Here is the truth. Huge chunks of disabled folks can’t drive and need safe pedestrian rights-of-way, accessible traffic signals, good public transportation and community supports to access these things. When you have shown concern and advocated for all of that, come back and talk to me and tell me how concerned you are for the few mobility disabled folks who need door-to-door transit.
Ok, if you are one of those disabled people who needs door-to-door transit. I hear you. You don’t want to be lost in the shuffle of urban planning that would transition us to a walkable, public transit lifestyle and forget you exist, thus leaving you in the dust. Every disabled person gets that because we have all felt it. So the answer here seems to be that we absolutely need to include you in the planning of communities that are not car dependent. There are more ways than just cars to get you where you need to go. This may mean you get funding for a better smaller and eco friendly vehicle, or it may mean you get housing priority in very near to transit and walkable places, or some kind of electric cart or wheelchair enhancements or human assistance (wheelchair accessible rickshaws, anyone?) to get around. Options and solutions for you can be found and that matters. You need to be part of the conversation.
But look at it this way, too. Right now, there are millions left out of the car centric system. Blind people like me, poorer people and people with other disabilities, people who struggle with addiction, younger people, older folks, etc. And this impacts our civil rights and freedoms in countless ways. I am actually Deafblind. Deafblind people are not as able to access safe street crossing as blind people. Many Deafblind people are imprisoned in their houses and can’t go out without help. A world with very limited or no cars and that is set up in accessible ways (tactile markers, digital tags for signage, etc.) would mean that they could walk freely in their communities. I will fight for the mobility disabled who need door to door services. Will you fight for us (and the broader world), too?
Car Culture is a Failed System that Needs to Go
Cars are convenient. I get that. But is some convenience worth all of the failure and destruction that car culture has infiltrated on society? They kill people. They kill the planet. They cost billions and billions of dollars. They waste and ravage our lands. They marginalize entire communities. The isolate people from their communities. Car culture has ruined our communities to such an extent, it does seem hard to imagine how life could work without every individual having a car. But we can improve our communities greatly by rethinking and reprioritizing how we want to live. Improvements in land use, public transit, supply chain transit, community planning, agriculture, and pedestrian and bike infrastructure and safety can make not driving a car every single day to every single thing totally doable, workable and enjoyable.
I’ve been a bit incognito lately, so I am writing sort of an update to see if I can still write.
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 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.