Why I Homeschool (Part 1): The Rise and Fall and Rise of My Teaching Career

Image shows colorful figures of three children, holding hands. The middle child uses a wheelchair. Inclusion only works when numbers are small enough for people to really know each other and meet each others needs.

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pressure and in an almost impossible situation because of lack of support, political forces gone out of hand and outdated methodologies.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?

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.

Assistive Technology is Terrific, But It Doesn’t Erase Your Responsibility to Be Inclusive

Graphic shows pixelated image of several hands reaching up from the bottom of the screen to various icons representing different kinds of technology. Intercepting arrows represent relationships between many types of technology accessed by all the hands below.

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.