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.

The One for Jo

Leora “Jo” Aughe (1923-2017)

Leora (Jo) was a life long resident of Southwestern Iowa, and was a member of the Council Bluffs community for the last 58 years. Leora was a stay at home mom who from time to time babysat other children to help make ends meet. Leora had a kind and nurturing soul, that influenced all the children she guided and cared for over the years. Leora’s smile, straight forward attitude, and say what’s on your mind nature will be forever missed.

The Daily Nonpareil

Its been two years since Jo died. Its interesting how obituaries can sum up a person’s life so nicely in one short paragraph, yet still be so lacking in the loss and grief that we leave behind. This is a lovely paragraph. It gets right exactly who she was very succinctly. She was 94 when she died. She had a long, good life and was ready to go. There are obituaries like hers every day.

But for me, I felt like there should have been a banner headline on the front page of the Nonpareil.

JO DIES!

End of an Era

All of Southwest Iowa should have shut down. People should have lined the streets. The MidAmerica Center should have been filled for her funeral. Its what happened a few days after her funeral when a police officer was tragically killed in the line of duty. Of course, I understood why it happened for him and not her. I understood why, after 94 years, only about 30 or so people were left to show up at her small memorial service. (and I also understood that it was her desire to keep the memorial service very low key and private.) But, this is how it felt for me.

It was a weird week for me to come back to Council Bluffs, Iowa for her funeral. I had not been back for 9 years. 2008 was the last time I saw her. We hugged when saying goodbye. Both of us not saying it but knowing it could be the last time we saw each other. It was. It was hard to get back for her funeral as I don’t drive, my family of origin had moved away years ago, and I didn’t even know how I was going to get to the small town of Glenwood for her funeral until thankfully, my sister drove up from Kansas to get me.  I was staying with a very sweet aunt who was driving me around. It was rainy almost the entire time I was there. One of the most painful moments was when my aunt and uncle drove me by Jo’s house (already sold) and I realized I would never again run up those stairs to the porch and swing on the porch swing, or step inside and see the one constant of my life for 46 years, Jo.

The last time I sat on the porch, in 2008.
Jo and my twins in 2008.

Jo and I are not related. She was my babysitter from the time I was born until I was around 10. But I had a lifelong relationship with her and my friends coined the term “Lisa’s fake grandmother” for her. Some of my earliest memories are of her and at her house. I arguably spent more of my baby-toddler- and preschool years with her than with my mother. I remember calling her “mom” for many years, because she was a mom-type person and that’s what you called the women who took care of you.

I have a hundred little bits of memories of Jo’s house. “Going to Jo’s” was just something you did. I remember her reading books to me as I rocked in her lap. There was always coffee (with powdered coffee mate) sitting on the floor and we were not to bump it. I remember that during 2:00-3:00pm, you had to be quiet and rest because the soap opera “Another World” was on. I remember being sent down to the corner grocer, Beirshank’s, to get a few items for her and having an extra few cents for sixlets candy or in the summer, a freezy. I remember how she would say these expressions like “Well, shoot a blind bug!” I remember digging for worms in the backyard, staying out of her garden, and riding around the block on my big wheel. I remember how we would just hang out on the large front porch and random people in the neighborhood would come up and sit down and talk for awhile.

Jo’s house on Benton Street. Its for sale again. I keep thinking I should buy it because it is such a sturdy house my kids couldn’t kill it. But how would we live in Council Bluffs?

I could go on and on with these little memories. But I think why she remained in our lives even after we got too old to be babysat was mostly because of my mother. I think my mother valued Jo’s family as our bonus extended family as much as I did. We did not have strong relationships with our biological grandparents. My paternal grandmother was a Jehova’s Witness and we were not. I believe she was a kind, well intentioned woman who felt that she must expose us to as much of the JW religion as possible. Thus, the time we spent with her was not really all of that enjoyable for us and the religious differences caused tension in the relationships within the family. Mostly, I don’t think we saw her that often.

My mother was not close with her mother. There was a history of domestic abuse, poverty and alcoholism there. I know that some of my cousins saw a different side to my maternal grandmother and became close. My feelings are much more neutral. I recall being in the same room with my grandmother at family events, but have very few memories of any sort of personal interaction with her whatsoever. One of the only ones I have is when, at my uncle’s wedding, she came up to me and taped a bow from a wedding gift on my dress. Then she walked off. I kept that bow in a tin box for years. But that is one of the only memories I have of her interacting with me, personally.

So, Jo’s family became sort of my first notion of the concept of a “chosen family.” And I think my mother nurtured those bonds. When I was 11, Jo’s husband, Irvin, died suddenly. I remember going to her house that day and it was filled with people. I remember Jo getting up from the table and coming over and hugging my sister and I and saying, “Can you believe it, girls?” which instantly turned us into tears. At his funeral, we sat behind the curtain in the private family area and my dad was a pallbearer. I had been to other funerals, but it was my first big loss. Afterwards, Jo took on quite a few more children, and my mother would drive me over to her house on the weekends and in the summers to help take care of the kids and keep Jo company. I enjoyed helping with the kids and it was one of the first notions that maybe I wanted to be a teacher when I grew up. I also remember one of those weekend visits, Jo suddenly announced we were going to Glenwood to visit Irvin’s sister. We went and visited (and I remember playing with a little dog) and when we left, Jo said, “I just couldn’t walk in here alone. I had to wait till I had someone to go with me.” And (it was either Edith or Virginia?) said, “Kids make it all seem a little better.” I was glad I was able to do something to help.

At Jo’s funeral, I realized how much I had been involved in these people’s lives through Jo. As a kid, I remember going around to little towns like Glenwood and Red Oak on memorial day with Jo and putting flowers on graves and visiting relatives. I remember visiting one of her sisters farms and playing in a lake in the back yard with inter tubes. I became friends with a girl my age named Shanelle, whose mother was Donna, Jo’s niece. We visited often and took sewing to her house. Once, we swam in a huge horse trough that they had in their backyard and turned into a pool. Other visits were with the Palser family, another of her nieces. Her niece’s son, John was a baby that I “got” when I was seven. He started coming to Jo’s house for child care and I took care of him like he was my own baby doll. I saw him almost every day for probably his first 4 or 5 years.  I know he doesn’t even remember me now, but I loved that kid.

Jo’s children, Roger and Carol were like rock stars to us. Roger had this long hair and was an artist. He painted this psychedelic mural in Jo’s basement that was in a room with a black light. I liked to turn on the black light and make that mural scare the crap out of me. It looked so creepy! Once, Roger and his wife, took my sister and I to his house on a secret mission to take pictures of us as a gift for our mom. We took some inside shots, but then we went outside and he took pictures of my sister and I throwing snow on each other. It was a lot of fun. He made a mosaic of pictures for my parents, and they hung it up on our wall for years. I’m sure my dad or sister still have those pictures somewhere.

Carol was so beautiful and glamorous. I thought she looked like Cher. I was jealous of my sister who got to be a flower girl in her wedding. Her husband at the time, Jim, always did magic tricks. We would sometimes go to their house to visit in Oakland, Iowa. It was the coolest house. It had three buildings, and a fountain on the patio and the upstairs had all of these little nooks and crannies to hide in. One of the buildings was a game room and had pool tables and foos ball and stuff. They also had a music room with an organ with all of these buttons to play. They were always kind to us and were lots of fun. My mom hired Carol one summer when I was about 12 to hang out with me, because I think she felt bad that I was all alone in the house over the summer. Carol and I would go to movies and different places. I remember going to see E.T. with her and also to Peony Park. I was at a really awkward age and was probably a pain to put up with, but she did.

My mom understood a child’s need to have other adults in their lives than just immediate family. Jo was always the “back up” parent. Both literally, like when my parents went out of town, and figuratively. My parents didn’t fight a lot, but once they fought about something and I got it in my head that they were going to divorce. I called Jo and said my parents were going to divorce. She listened to me, then said something about how everyone fights and she doubted they were going to divorce and to just let it go. When my sister became upset because a classmate’s mother died, I remember her being very worried that our parents would die, too. After trying to reassure her that my parents were not likely to die soon, Jo finally threw up her hands and said, “well, if they do, I’ll take care of you.” During my teenage years, we had moved to Omaha. There was a sign near our house that said “Council Bluffs – 17 miles.” To me, that sign meant it was 17 miles to Jo’s house. This didn’t seem that far to me. I figured if I ever needed to run away, I could go 17 miles and make it to Jo’s house. (As if that wouldn’t have been the first place my parents would have looked.) I never ran away, but Jo was my back-up plan.

One of the few pictures I have of Jo from my memories. Its my sister’s first day of Kindergarten, and I’m very sad about it.

Except I did sort of run away later on. In 1993, I had a very weird summer. I just got my first guide dog where I met my (now husband) Nik. He was from Sweden, living in Canada, and when I tried to figure out whether I could live in Canada, they rejected me because of my disabilities. Then, I had a bad kidney infection and ended up in the hospital. Then, I found out my university was refusing to let me student teach, even though I had good grades and good practicum reviews. Then, I lost my summer job at a Head Start preschool because someone’s parent didn’t like dogs. I felt defeated. It was all this discrimination socked at me at once. I called Jo one day and said, is it okay if I just show up and stay at your house for awhile? She said, “yes, when?” I said, “in about 2 hours or so.” She didn’t bat and eye. I took a greyhound and a cab and slept on her couch and walked around for a week. Then I went back to school, cut my losses with Nik and Head Start, and worked on getting a student teaching placement myself. It was a needed respite so I could get back in the fight.

Jo had a way of being sympathetic without pity; understanding but without accepting any drama or nonsense. She once had a friend named Opal who would call her and talk incessantly. Sometimes she would motion for us to call her and act like we were hurt or needed her so she could get off the phone. I asked her why she talked to her if she always wanted to get off the phone. She said that “Opal needs someone to listen to her but not put up with her drama.” That pretty much describes Jo. She would listen to you and be understanding, but she would cut you off if you couldn’t get over yourself or your problems and just tell you to get on with it.

Over time, as I moved on with college and my own life. I saw less and less of Jo and her family. But I would call her often and I would always get all the updates on the grandkids and neighbors and family members. At the funeral, I talked briefly with her four grandchildren and wondered if they knew that Jo gave me regular updates on their lives for the past 40+ years. “Is it ok that I know all about you?” But now, all the sudden, I no longer will.

The day after the funeral, I found myself in Lincoln, Nebraska on a Sunday. On Monday I had some work meetings and was going to visit friends. On this day I was going to just hang out and walk around my alma mater. But it was cold and pouring down rain, and I couldn’t get out of bed. I just laid there all day, surrounded by some pictures that Roger had given us at the memorial service. I had fits of crying and laughing. I tried to write something like this, but mostly I just laid there in a daze. At some point, I had a little Eureka moment. I realized that Jo was one of the very few people in my life where I was just “Lisa.” I was not the Deafblind one, or the needy one, or the perpetual baby of the family, or the radical one, I just was who I was.

Jo, Irvin and son, Roger before my time.
Pictures from the memorial service, on my hotel bed in Lincoln.

Over the last few years, it became really hard for me to deal with the phone with my hearing loss. And Jo was one of those older people who never really embraced the internet. It became a difficult thing to communicate with her, especially as she got older and sicker. Roger was a great help to me in this area as he would take my emails to her and read them. And he made a video of her for me where the first thing she said was the one thing I always knew. “Girls, you know I love you.”

Whether biological or not, the bonds we choose for ourselves and love unconditionally are the strongest. Grieving is having lost the direction to put that love that still exists. So we have memorials and plant trees and write long tributes. And we try to appreciate and perhaps carry on the gifts we were given that are still ours.

Leora had a kind and nurturing soul, that influenced all the children she guided and cared for over the years. Leora’s smile, straight forward attitude, and say what’s on your mind nature will be forever missed.