Category: Life Updates

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.

Kommer Jag Att Vara Super Pigg?

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

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

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

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

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

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

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

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

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

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

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

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

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

Yet Another Blog

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

But first, a note on the neglected blogs.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The cast of Crybaby.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

October Odds and Ends

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

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

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

Disabled Moms Interview Project: Lisa Ferris, Deafblind Mom

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

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

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

Nik’s Al Jazeera Article (Arabic)

Nik’s Al Jazeera Article (Google Translate URL)

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

Social Media Social Experiment

Its been just about 3 months since I decided to do an experiment and greatly reduce my use of social media and my various devices in general. Since I am Deafblind, I can’t realistically reduce my device usage. I depend on it so much for access to the world. But I wanted to change HOW I use it. I wanted to make better use of my time.

The first thing I learned was that no one noticed I did this–except for my sister. This is hilarious because my sister has exactly 0 social media accounts but does lurk from time to time. I can’t blame anyone for not noticing my absence, though. Once, a Facebook friend I liked very much died of cancer and I didn’t even know until 2 months later. I felt terrible, but its the nature of the beast. You don’t have any direct responsibility to engage, but then no one really expects you to, either.

The second thing I noticed is that I feel generally better. I feel a bit guilty about this because one of the reasons I feel so much better is because I am no longer getting the daily influx of horror stories about civil rights violations among the disabled, as well as getting less of a dose of The Trump Circus. Not only did I delete Facebook and instagram from my devices, I deleted all news sources except the New York Times and Washington Post, which I pay for, and the Apple News app. No more CNN or Huff Post for me. I also limited my time to reading through the headlines while I eat lunch. So, I get in about 20-30 minutes of news a day.. I feel guilty because I know I am less informed. I have many fabulous Facebook friends who are ON TOP of disability rights issues, and this is near and dear to my heart. Rebecca Cokely, Haben Girma, Mike Ervin, Suzanne Fast, and many others are heroes in the movement and probably would not dream of turning away from awareness of these very important issues. So, I guess it is a balance of sanity vs. advocacy and action. I’m still working on finding my balance.

I also miss just the fun posts that give me updates to how my friends and family members are doing. I like seeing my cousin Michelle’s children go off to college or go to a dance competition. Or my Aunt Merrily’s crazy travel adventures. I like seeing how my friends, Shannon and Leanne and so many others are faring with their work and their children and their challenges. I like to be able to root for them when they are having struggles and hope that maybe I can send them a kind word of support.

I also have built a network of friends on the Deafblind groups. This is a unique group of people who historically have been very isolated and are really using social media to find their voice and connect with others in a way we never have before. I have really valued the relationships I have built in the Deafblind community. The flip side of that, however, was that I was finding that I was spending a large amount of time answering tech questions, disability logistic questions, administrative and service provider questions within this community. There is nothing wrong with this; I like being able to help. My connections in my professional life give me a ton of knowledge and resources to share and I don’t mind sharing. But it was taking up a LOT of my time. I don’t want to be one of those people that won’t utter a word of professional assistance without being paid, but it was a lot of unpaid labor that took time away from other things.

And other things is exactly what I have been doing with this extra time. I’m always taking a class or two or three, so I have been continuing with my Hadley School for the Blind Braille courses (uh…which I’ve been slowly getting through for–embarrassingly–years). I also signed up for the Western Oregon University DB interpreter online course (not to be an interpreter, of course, but to learn more about ProTactile Communication so as to better serve our DB clients in my job.) I also had time to work through the Dave Ramsey Financial Peace University stuff and have been working a lot on getting a better picture of our finances.

But my main goal was to try to write more, either for my self or professionally. Since I work at our business part-time and homeschool my children part-time, writing projects are the things that always get put at the very lowest priority of the task list and never get adequate time. It is still hard to make time, but spending hours a day drifting around on social media and news sites wasn’t helping anything. I’ve started a Day One journal, for all the private, not worthy of anyone’s eyeballs garbage that goes on in my head. In this way, even if I don’t have a commissioned article or an idea to pitch, I still set aside time each day for Writing! even when that writing is really crap.

I would also like to expand my writing to be more “investigative journalism-ish.” And for this, I need to acquire some skills. I get asked all the time to either write about access technology (which is fine and I can mostly do in my sleep) or “my personal story” and personal essays and the like. I’m kind of sick of my personal story to tell the truth. At least I am sick of writing about it.  I want to try to be sort of a real journalist per se. I would like to interview people and research things and go deep on issues and get to the bottom of things. I would like to take a crack at writing other people’s stories.

Because my husband/business partner and I own a company, I actually really can’t completely cut off of social media. We have a business website, we have a Facebook page and twitter, etc. And I would feel too cut off of social justice and political issues to give up all of my screen time, and my DB and other friends are too precious to give up. There needs to be a balance that I am still trying to find. I still do not have those apps on my mobile devices, but I did not delete my accounts and if I need to post something up on my business site (which I usually do from my desktop machine) then I will look at what all of my friends and colleagues are up to as well. It has turned out to be about twice a month. I will make a few comments and I am happy to see what people I care about are up to, but I am not missing at all much of the ads, silly videos and memes, crap news stories, etc. that are always imbedding between the posts I want to see. I don’t miss feeling like I have not accomplished much because I have been surfing all day. And I also don’t miss the feeling of thinking of life in terms of what I can post on Facebook, instead I am more focused on being in the moment and living it.

I also had time to do this website. I am hoping to not only sort of have a repository for my writing, but also be able to “cut my teeth” on some writing on this site. I know I need to find an effective way to interview people as a deaf blind person who is phone phobic. And to be able to research issues using available technology and methods. I have a whole list of people (that’s YOU, Facebook friends!) that I want to practice interviewing and writing about. And if and when I do publish anything, I will have a little place to keep it all.

So, I’ve been here and not out there, but I will visit from time to time. I welcome anyone who wants to to stop by and say hi or give me feedback on anything you see here.