This article I wrote for Rooted in Rights was a tough one for me. I ended up rewriting it 3 times. The first version I turned in to editor Emily Ladau was over 3000 words long and was a meandering thing full of caveats. I did not want to put my mother in a bad light, and I felt like I could not tell my personal story (a requirement of the piece) without her. I knew I needed to slim it way down. Parts I cut out were:
That I grew up in the 70s and 80s, and even though there was a lot happening in disability civil rights in places like Berkeley and Denver, none of that made it to suburban Iowa or Nebraska.
That the word ableism wasn’t even really a thing yet.
That there was no internet and significantly less local organizing. Families back then really only had the medical and educational professionals to tell them what to do.
I went to kindergarten in 1975, the year PL 94-142 was passed (now known as the Individuals with Disabilities Education Act). Having teachers of the visually impaired and blind kids with IEPs in regular schools was brand new.
“Maximizing vision” was the best practices at the time. This has somewhat changed since then.
What I also wanted to say, is that although in my mother’s time, the conditions were as above, making it challenging for parents to recognize that they maybe needed to get rid of oppressive attitudes about disability (or even understand that they had oppressive attitudes about disability), these excuses are not nearly as viable today.
Today, when a parent has a disabled child, it is much easier to find accurate information, learn about disability as a civil rights issue, and connect with adults with disabilities to find role models. Although I recognize that inherent ableism will not go away overnight and there is a learning curve to understanding and accepting a disabled child for who they are, there is really no excuse for parents to still hold the life-long poor attitudes about their disabled children that they did in the past. Self-Advocates have worked hard to reach out and be welcoming to parents and families. Information is readily available. Its not perfect, but support is out there.
However, I still see parents hurting their kids with their ableist and unaccepting attitudes. I still see parents who treat adults with their child’s disability with loathing and disdain and I still see parents forcing their kids to “PASS” as not disabled (or less disabled) using methods that are unworkable at best and cruel and abusive at worst.
Instead of using the internet as a tool to reach out and learn from the disabled community, I see parents using social media as a way to martyr themselves using their “difficult” special needs child as a prop for how wonderful they are and how worthy of praise for putting up with such a kid. They display their child to reach these ends without any respect for the child’s privacy and understanding or empathy for their child’s point of view.
Every once in a while, I am asked to meet with a parent support group. I tell them, I DO NOT DO support groups. I am not a counselor, I do not care to sit and listen to parents whine and cry about their hard life with their disabled child. What I will facilitate is Information Exchange Groups. I can help with information about learning alternative techniques for sensory impairments. I can help with learning to take control of an IEP meeting and know your child’s rights. I can help you learn to advocate for reasonable accommodations. I can update you on tools and technology are available, etc. Why should I listen to you whine in fear about how your child may never go to college or live independently or have a family when I know that is a wrong assumption and I can show you hundreds of examples of people with disabilities who are doing those things successfully and we can talk about how they do them?
For many families, getting this information is exactly what they need to move beyond the fear (and need for whiny support groups) and get past their ableist attitudes. If those families keep working on it, they will be fine. But then, there are the others. Families who really DO NOT WANT TO KNOW the solutions to living in the world as a disabled person. Who don’t want to meet and accept successful adults with disabilities and who don’t want to be told that whining and martyring yourself on the cross of your child is damaging. When this happens, my goal changes. I focus on the kid. I try to give that kid (sometimes adult kids) every opportunity to obtain the skills and resources they need. Because when you find yourself in a family like that, you need to RUN AWAY as fast as you possibly can.
Luckily, there is a community of disabled adults who will be there to support you.
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.
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.
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.
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.
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.
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.
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.
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.