I find myself wondering what the purpose and interest is in these articles. But I think it is like everything in our lives. People don’t realize Deafblind people exist. I can’t tell you how many times I tell people that I am Deafblind and that is why I need X accommodation and they are like… struck dead in their tracks in disbelief that people really exist in the world and have lives and jobs and kids, etc. while being Deafblind. So, hopefully these articles possibly make people stop and think about considering us in the decisions they make when they develop policies for this situation.
Also the most frightening aspect of this for all disabled people is this notion of eugenics oriented triage and the risk that we will not get access to the same health care as others. For Deafblind people, the problem of communicating in a health care setting where people may be unwilling to allow for interpreters, communication devices, touch-based communication and other methods leads to the fear that we will be cast aside and given no human consideration whatsoever. So hopefully these articles will allow for some creativity and imagination when it comes to our community and the realization (yes, I have to say this) that we are actually worthy of health care.
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.
…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.
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.”
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.
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.
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.
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.
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.
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 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.
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.
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.
I’m attempting to wake up the homeschooling blog, which has been almost dormant. I have kept a pretty basic yearly summary of what the kids have done each year. There are some challenges there, as well as some places I could go with it. In this homeschool blog post, I try to round up the ideas floating in my head about it.
When Attorney Leonard Duboff, who is blind, asked me to help him write an article for the Oregon State Bar Bulletin about digital accessibility, I said “sure!” and then promptly skedaddled over to the Bulletin website to get a feel for its tone. When I got there, it all made sense why the article needed to be written. Displayed in a photo flipbook format, The Oregon State Bar Bulletin was 100% inaccessible. “Ah, I see!” I thought. “I will be writing an article about blindness access that no blind person will be able to access. Classic!”
To their credit, once the OSBA was made aware of the issue, they did take steps to remedy the situation. They are working with our web accessibility consultants to improve their website’s compliance with WCAG guidelines. I hope that improvements will come soon for blind attorneys, law students, and consumers alike who may wish to access the Bar website and its Bulletin and archives. For now, the OSBA has posted, as an emergency measure, the entire Bulletin in PDF. Though now somewhat readable, it is still a headache-inducing, accessibility nightmare. For those of you who dare attempt to read it with screen readers and braille displays, I salute your bravery. (But if you really would like to read the article, email me and I can send you my word file of it. I can’t post something I wrote and NOT give you a way to read it!) For the adventurous, though, You can find it in the May, 2019 edition of the Oregon State Bar Bulletin.
A very similar article written by Mr. Duboff and myself was also picked up in the April 2019 edition of the New York State Bar Association Journal, but you probably can’t read that one, either. This is not an accessibility issue, though. What I can access of the NYSBA website is actually fairly accessible. But the journal is behind a login wall for members only. As a courtesy, authors are usually given free copies of publications they contribute to, and I asked for a digital copy. This is what I was sent:
I can’t read this article, either–at least not with significant effort and a top notch OCR scanner. So we’ve got a ways to go on this topic, don’t we? But I will keep chipping away as best I can.