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.