My little twinnies, the ones that made me a mother, are now 18 years old. Like many parents, I can hardly believe how fast it went. But the fact that 18 years has passed is very significant to me.
When I think about “18 years,” I think back upon the worst moment I had of being a mom. It was when my twins were only about 3 weeks old. They had been born via C-Section about 5 weeks premature. I was recovering from this plus an unexpected eye surgery a couple of weeks prior to their birth. I could see a bit of light out of my left eye, but my better right eye was blind now. I have always had low vision, but I was adjusting to a a new level of blindness. My children’s father, who is a C6-7 quadriplegic, was having difficulty lifting the babies out of their crib. It was a bit of a mental thing. He could do it with a special swaddling blanket we had gotten with loops on the corners. Or at least he had done it before they were born with dolls and flour sacks. But with live babies, he lost his nerve. So, instead of taking shifts where I could sleep, he woke me up all the time whenever they needed to be held or fed.
I was going on…I really can’t calculate how many days of extremely little sleep. My premature infants were having difficulty suckling and were a challenge to feed. And as I sat on the couch, I felt absolutely abandoned. Because for the most part, I was. At that moment, I felt like I could not go on for 18 years this alone and this tired, with this much hatred coming my way. The concept of “18 years” of parenting ahead of me was overwhelming. For pretty much the only time in my life, I thought of how I could kill myself without leaving the babies unattended or doing it with someone else in the house who could take care of them. At that time, they really couldn’t go more than two hours without care and not have grave risks to their health. The logistics of that problem despaired me even more.
I knew my decision to have children as a single disabled mom would raise eyebrows and I knew it wasn’t a decision everyone would make. But I had an education, good skills, and a decent full-time job at a university. I told people I was planning to have kids. I did not hide it. People just sort of went along with what I said without much comment. But looking back, I guess people did not believe me? Because the reactions I got when I told some folks found out I was pregnant were beyond any expectation of negativity. A family member walked out of the room and didn’t come back. Another one, whom I had told in what was supposed to be a celebratory dinner, left the restaurant and chose to walk home. People wrote emails about me that got back to me that talked about how awful I was, and I was shown a video clip of another family member (who wouldn’t decide to come meet my kids for over 2 years) where they talked about how I was going to fail behind my back. Even strangers on the street said vile things to me when I began to show as pregnant. People who walk around with white canes are not supposed to also be pregnant apparently.
Not to seem over confident, but I had never had any doubts about my ability to be a disabled parent. NONE. I had been taking care of other people’s children for forever. I grew up taking care of kids. I had two degrees in education and spent countless hours in classrooms taking care of kids, some of them very medically fragile. To pay for expenses during college, I had started an ad hoc business providing care for kids with significant disabilities. I worked in classrooms where kids were labeled “behavior disordered” and I took care of kids in their homes who used oxygen and life support. I worked for two years in the Child Life department at a children’s hospital. I worked both in the oncology unit and the PICU. I was a certified nursing assistant with CPR certification. I knew how to take care of people with a variety of needs using alternatives to vision when I needed them. I even counseled other blind parents on ways to adapt to tasks as a blind parent.
All the things people worry about with blind parents did not phase me at all. How to feed a child when you can’t see their mouths? I had already done this many times. How to know if your child has diaper rash? Easy, you can tell by the way their skin feels and how they react when you touch it. How to find them on the playground? Bells on their shoes and also getting up on the play structures with them. Getting them around with a white cane or guide dog? No problem, with the right stroller, pulling them behind you works just fine. Knowing when they are up to something? Well, this develops over time, but its all about communication, knowing when the silence is a little too silent. Context and a bit of a sixth sense. Did my kids ever sneak around me and do things without my knowledge? I’m sure they did, but not any more than anyone else’s kid does. Parenting while blind was not all that hard and not something I worried about.
But I did not count on how the ablism I experienced would be passed on to my kids.
About 2 weeks before the twins were born, right after my eye surgery I was on bedrest. Some family of the kids’ father called me up and offered to bring me dinner. How nice of them, I thought. I did not feel like eating, nor did I feel like getting up and socializing. But since they made the effort, I forced myself to. When they got there, my partner and I were ambushed. They were just yelling at us. “How are you going to get through the first 30 days?” They demanded over and over again. I suggested that I could get several people together to take shifts or days to spend a few hours helping me out, just until my C section healed and I was back on my feet in a routine. “No one wants to help you,” they said. “Everyone expects these babies to end up on their doorstep when you can’t take care of them.” I was blindsided. Ok, I said. No one has to help us. Fine. Don’t worry, no babies are going to be left on doorsteps. It was so hateful and out of left field. What had I ever done to deserve this? In the ten years I had known them, they had helped me move twice, and done some other stuff for my partner, much of it was unsolicited by us. It seemed like just, family stuff. And if it were not to them, I would have appreciated knowing that they felt this way a little bit before I was due to give birth. But I was never in the position of being taken care of on a daily basis by anyone.
Even in the hospital, some of the nurses were not on my side. A CNA came in to tell me in the middle of the night that the nurses had called CPS and said we couldn’t feed our children. Since my kids were premature, they had some eating issues. This was very common. I was both pumping milk, and breastfeeding and bottle feeding two infants with no sucking reflex the entire time I was in the hospital. But their weight was dropping. Nearly every other mother I have ever talked to who has been in this situation said that their kids went on to spend time in the NICU with a feeding tube until they could eat enough by mouth. My kids never got that care. I just got accused of not being able to take care of them. Even the nurses couldn’t get them to eat much.
This horrified me and I was able to mobilize some people who I knew would rally for me. One was a county health nurse that I specifically let into my home to create an ally for this exact situation. Although she was mostly helpful and did keep my children from being taken away from me by the hospital staff, She also asked me if I wanted to give my kids up for adoption. Do other mothers get asked this if they don’t bring it up first? I haven’t heard of any.
I had started to learn over time that people who judge you and think that you will fail at something really want to be right about their judgement. So they will do things to help their prediction come true. I remember when a couple of my high school classmates became pregnant. I noticed that people who thought they were terrible girls who screwed up their lives actually caused problems to specifically make their situation extra hard. And this is what was happening to me. I did have some challenges: premature twins, a C-section birth, a recent eye surgery that made me have to adjust super quick to my new level of vision, a partner who–although did help me in many ways–was unable to help in other ways as we had originally planned. Those things were legit challenges. But instead of getting more help to meet these challenges, I got less help than any average person would even get. I got hatred and scorn. Not just by family and friends, but by the very people who were paid to be in positions to help me like lactation specialists and social workers. People wanted to see me fail and were keen to make that happen.
So all that caught up with me while sitting on the couch that one day while my babies were intermittently sleeping. Never underestimate what a serious lack of sleep with do to you to mess up your brain and make you unable to think straight and solve problems. I could not function and so it seemed like everyone was right and I was failing and there was literally nothing to be done but to off myself and let these babies be adopted.
And then I saw John Denver.
Yes, John Denver. I was hallucinating. Or more likely, coming in and out of minutes of sleep while sitting there and not even realizing it and having these micro dreams when I thought I was awake. Days before, I had been going crazy by the lonely quiet in my house. My eye surgery was a bit of an emergency. I had no time to prep my house to adjust by marking buttons or things I would use. So I had been just aimlessly pushing buttons until things worked. I was looking for a CD or something to listen to music, but couldn’t see the labels, so I ended up finding a DVD that my dad had left of John Denver’s Wildlife concert. It took me forever to get past the menu on the DVD that I couldn’t see. So when I figured it out, I just listened to that thing constantly. And “Annie’s Song” seemed to comfort my kid.
So, of course, John Denver sat down with me and told me my main problem was that I needed to take a nap. “I can’t!” I said, ” there is babies and breastfeeding and pumping and formula making and diaper changing! How?”
“Just take the money!” he said as he threw piles of cash on me. “just take it, no one cares.”
“What?” I said as I jerked myself awake.
Later that day, my partner came over with a number for a nanny service. he said we could get someone probably that night or the next night. And he said we will just deal with the cost with credit card debt or whatever. And I thought, “John Denver told me to just take the money. John Denver is my dad’s DVD.”
I called my dad. “Dad, I have made a mistake.”
“You mean, it was a mistake to have kids?” He asked.
Goddamn you people and your absolutes about my failure. “No,” I said. “I made a miscalculation with how many people I thought could help me and what (my parter) would be able to do. Its a temporary issue and I will get a handle on it. But right now I need to sleep and heal and get my energy back. So I am going to stop paying you rent for a few months, OK? Think of it like the money you never had to use for a wedding or college or whatever. It can be like your baby gift that would really help me out a lot”
He never said ok, but he never got mad either. I just took the money. I simply stopped paying him for a few months, then I resumed. He just let it go. I saved $3600 in rent. I paid out about $6000 in nanny fees over the next three months for a nanny to come 5 nights a week. By the time the kids were 6 weeks old, I was feeling pretty ok and out of the fog. By the time they were 3 months old, they were eating, we had a routine, I let the nanny go with my thanks, and I was joyously happy to be a mother.
Most problems are temporary. Don’t let anyone tell you that they are permanent, or worse, your personal permanent failings that you can’t overcome. I had a temporary problem that had a fairly easy fix. I do appreciate my dad helping me out. He also came out and made his lap available to plop a baby or two in when needed. The fact that when I needed help for a temporary problem and so many people were ready to jump to take my kids away permanently is a lesson that I will never forget. Although it is fine to get advice from others, I will never let anyone define my problems or dictate the solutions again.
Although there have been some bumps and snags along the way, the vast majority of my time parenting my 3 kids has been positive, fun, loving and good. That period, just two weeks after I became a new mom and I hit a hard wall was the bottom and it all went up from there.
But the ablism and exclusion continued over the years, and I still have to say that it was something I didn’t predict when I thought about being a blind mom. Of course it wasn’t everyone, but time and time again, my kids have been treated differently because they have a disabled parent.
Although some family members came around and developed relationships with my kids, others never did. I am not speaking about family with good intentions that live far away and are busy with their own lives, I get that. I am talking about living less than a mile away and my kids never getting invited over for family holidays. For some, being disabled means you need to stay in your place, and not want too much or go beyond just being a meek and grateful little disabled person who doesn’t ask for too much or do too much. And it doesn’t matter that I have raised kids without help for X number of years, I am still a disabled person who didn’t know her place. Some people are set in their ideas about your capabilities no matter how much you have accomplished or how hard you try to educate them. It is difficult when ablist attitudes are stronger than love.
So, they missed out. On birthdays and Christmases. The wonder of the first visit to Santa and coming down the stairs to see what was under the Christmas tree. First words, first steps, first day of school, first play, school graduations, all the things, they were there for none of it. They missed out. But bizarrely, every so often we would run into each other by accident. And then it was all hugs and smiles. Sometimes, my kids wouldn’t even know who was coming up to hug them because it had been so many years since they had seen them.
I have a friend whose family was excluded by her grandparents due to religious differences. She was the first college graduate in the family. Upon her graduation, the grandparents took her out for dinner. Everyone was acting like they had known her for her whole life. And later she said, “That was the weirdest thing ever. I just kept thinking, I don’t know you and you don’t know me. And you know what? You missed out. Because I am awesome.” That is kind of how I feel. We aren’t a perfect family but we are a loving, pretty awesome family. and you all missed out. Just because you wanted us to fail and we didn’t.
The exclusion we felt from members of different communities was a whole different beast.
Of course, not all people fit into this category and some were very nice. But many, many times, my kids missed out because of people’s judgement of me as a disabled mom. They missed chances to socialize with kids because their moms wouldn’t let them. I remember my child taking a liking to another kid and my husband invited them to a play date at our house. The mom said, “well, we don’t know you.” So then my husband said we could get to know each other by maybe going to a public indoor playground. “no,” she said, ” I’m sorry, I just don’t really want to know you. I don’t think we can really have anything in common with blind people and so I don’t want my kid to get attached to your kid.”
Another time a group of moms would go to a play space after church service with their kids. We couldn’t go because we couldn’t get there by bus. I suggested we go to another one that was more accessible, at least some of the time. “No, sorry,” they said “We don’t like that one and don’t think we should have to go there just for your kids.” It was hard for my kids to see the other going off together every week when they couldn’t go.
There was the time when my kid applied for a program that was within a school he already attended. It wasn’t really highly competitive or anything, it isn’t like there were not enough spots. But from the beginning, the teacher always expressed concern about my child being “ready” for this program. I asked if there was an issue. She didn’t know of one but was just “concerned.” I asked his other teachers if there were any issues I didn’t know about or whether they thought he wasn’t ready for the program. They said no, he was fine. But this teacher systematically made trouble for us at every turn. First she got mad that we dropped him off too early, even though it was within the drop off time. Then she got mad that we dropped him too late. Then he fell and hit his chin and she acted like this was evidence he shouldn’t be in the program (he was 6, it happens). Every day we got a new ‘talk’ about him but nothing specific. I went in to observe. him and he seemed ok, but she basically ignored him all day and never called on him when he raised his hand. I could tell he was bored so we withdrew him. It just felt like a needlessly hostile environment.
Or times when parents at school functions would sneak out of the room and not say hi when we entered, or move to a different cafeteria seat when we sat down next to them, or refused my offer to babysit then turn around and tell someone else that they have trouble finding childcare. Or just the implication all the time that my kids were “at risk” or “from a troubled home” just because we are disabled parents. Or all the questions they field about how they must have to take care of us. Or just a general “othering” of us. Not getting invited to things, Not getting the same opportunities. Again, I will say that this is not everyone all the time, but it is enough that it does affect my kids in ways I never accounted for or imagined. And no, I am not the only disabled parent to have these experiences. For parents with a visible disability, these incidences are very common.
It makes the kids less trusting of people and it makes them be super sharp in seeing when they are unfairly judged. It makes them a little wary about getting close to people. It makes it so they did not get some of the same chances to be involved in activities and relationships as other kids. It is hard to watch because there is not a whole lot we as parents can do about it. We talk to them about not taking it too personally and that it can be a litmus test to weed out people they might not want to know anyway. But often, sadly, the other kids are not the problem. It’s the parents who are overly biased and they are making it hard for their own kids as well as mine to become friends.
It got to the point where when they were old enough to start going places on their own (which happens earlier for our transit-savvy kids that others) we started staying away from their activities for the very purpose of limiting the amount of crap they have to deal with. It seems like between the choice of being thought of as slightly neglected kids with uninvolved parents vs. having involved disabled parents, the neglected kid scheme gives them a better deal. Its just sad, really. We try not to miss the big stuff still, like performances and big events, but we have purposely stayed out of the way to give them a chance to make headway on their own. Sometimes when we do show up and meet people they associate with for the first time, they have to absorb the shock and bias from other people. Families that were previously nice to them suddenly back off, and they never even talked to us first. It causes issues.
One time this teacher decided to be very concerned about my son because she felt “so sorry for him to have blind parents.” He went to a football game with strict instructions from me to take a specific bus that was right there, but the last bus stopped there at around 10:00 and I wanted him on that bus. He called me, sounding kind of freaked out because he missed his bus. The science teacher kept telling him he couldn’t get on the bus because it was dangerous. She went as far as to kind of physically block him from the gate out. He didn’t know what to do. When he finally had a chance to “escape”, he had to walk about 8 blocks at night to catch the nearest train when he would have been fine to take that bus. He was calling because he thought someone was following him. He said he thought it was the science teacher, but he couldn’t be sure and it was freaking him out. The car was waiting across the street in a parking lot after following him slowly behind to the train station. He was so freaked out, we FaceTimed his entire way home. Later I found out that the teacher WAS following him. I told her that I understand that she probably meant well, but she obstructed him from getting on the bus he was safest to get on, and then scared him by following him creepily to the train station without telling him. She basically thought I was an abuser because I made an almost 15 year old ride a bus that stopped right there and then took him 1.5 miles home. I was a shit parent because I didn’t drive and made my kid ride the bus, something he has done since birth and is comfortable with. I told her she was being biased towards people who use different modes of transportation. I could judge other parents who put their kids in cars. Cars are 20 times more deadly than trains and about 10 times more deadly than buses. Why is that risk ok? My son never wanted to go to another football game after that because he was afraid of his science teacher. (And then the pandemic happened and he changed schools, I think he would have tried again eventually.)
Blindness did not make parenting hard. Ablism did. Having blind parents wasn’t so hard for my kids, people’s shitty attitudes were.
When I think back to the 18 years of parenting these kids, I think I had a plan A, B, and C for everything. But I didn’t consider how much the ablism I experienced and was used to would rub onto them. I think I am pretty much past being overtly angry about it, and I don’t mean to call out and scold people so much as I would like people to think about what they are doing. If some child or family makes you uncomfortable to approach and include, take a moment and ask yourself why. Is it based on ignorance? Is it based on some unconscious bias? Might getting to know them a little better help you get over this bias? People could bring much richness into their lives if they could be just a little more self aware of their own reasons they are excluding some people. I also know that there were always a lot of people who were never overtly mean to us, but who just never engaged with us more than they had to because we “weren’t like them” and that made them vaguely uncomfortable. I would argue that we are much more alike than different.
I was helping my son pick out pictures for a college project that he is doing where he has to do a little bit of a retrospective of his life. We went through 18 years of pictures, thousands of them. It was amazing to me to look back and talk about the last 18 years of our family life. We have done so much fun stuff! We traveled to different states and countries, went on countless “field trips” to museums, plays, science centers, beach weekends, hikes in the forests, school events, swimming lessons, etc. Then there were all the birthdays and holidays and the gifts and traditions like Zoo Lights and Easter on the Willamette River. There was just the goofy things like pretending to be Star Trek crew and putting on little plays to lego builds and funny voices. There was gardening and airplane building and Taco Bell drive thru ducks and Mock Trial competitions. We have had so much fun as a family these last 18 years.
But with a few exceptions, we were in these pics mostly alone. Just us. Recently my youngest son and I went to visit my relatives in the midwest and he remarked that he had never been in anyone’s house before. That isn’t entirely true, but it is pretty close. All of my years of going to church, volunteering there and at their school and we were often still the odd ones out, relegated to nothing more than a polite “hi” at best or at worst, people being openly hostile to us. I don’t know if I could have tried any harder, been any more welcoming or done more to make people feel more comfortable because I feel like that is all I did for years. And then because there is no community, you end up doing everything yourself so you have less time to give to others and it becomes a self fulfilling prophecy.
Now, my little premature twins who made me a mother are going to go off on their own in the next year or two. They will have the option to a degree greater than ever before, to leave the disability world behind and and forge their own, likely less marginalized identities. It’s weird to think about them shedding their minority status. When we traveled last summer, we would go through security and as happens every single time, their dad and I were pulled out and had to do extra security at the TSA checkpoints. When the kids were younger, they would get pulled out with us, but now they just walk on through. My son wrote part of a college essay about it. How he gained privilege he didn’t even understand completely that he didn’t have before. It’s so weird, but it is true! I think when they go off further from us, this kind of thing will happen more and more for them, and I think they are in for a bit of a culture shock. I hope that they will both enjoy the new privilege and also remember to appreciate that others don’t have it. I feel very positive about many aspects of them growing up in the disabled community. I thing that it has given them powerful lessons they will use throughout their lives and are the better for it.
But I am still a bit sad, not so much for us or them but for you. You who (probably aren’t the ones who will be reading this, but) who missed out on everything my funny, smart, creative, mostly happy and often giving children had to offer. And you who missed out on how much fun it was to watch them grow up. And you who let your feeling of uncomfortableness limit you from everything our family has to give. I am doing some ruminating here, and again, I am not mad at anyone, just want to say…try harder. Try harder to move past your feelings of disgust or awkwardness or whatever it is you can’t get past. Try harder to include everyone. You may reap more rewards than you ever expected.
And if you are a disabled person contemplating having children, I still absolutely think it is worth it. Just be prepared for the reactions of people and don’t let it get to you. Try to build community beforehand so you don’t waste so much time on a community where its just never going to happen. Look to other disabled parents locally, too. I do wish now that I had just spent more time with the blind parents that are around me, even if most of them were all on the other side of town.I got invited a million times to “Mommies with Guides” groups and didn’t go because they were too far away, or seemed too “precious” or seemed too much about new blind parents talking about non visual parenting skills I already had. But I probably should have invested more in those groups so that my kids could have developed those long-term relationships with other parents and other kids. Don’t take for granted that your family will be happy for you that you are pregnant, and be willing to help out the first couple of weeks like other families often do. Although I did not hide my decision to become a parent and talked about it often in the 2 or so years I was working on conceiving, I never sat down with anyone and ironed out all of their concerns and made a plan for who was really willing to help and who wasn’t. There is a point to where people will not take you seriously, and so you probably just need to not count on their help. Also take some time to collect some professional allies. Programs such as Healthy Start, WIC or La Leche Leagues are good to reach out to and get to know you BEFORE you are vulnerable because you are recovering from childbirth. This I did do, and I think it saved me in the hospital when my parenting was questioned.
If you don’t have anyone who is willing to help you, it is ok and legit to hire help. This doesn’t make you a failure or prove anyone right about disabled people being incompetent parents or whatever. You have to own it. If you think you will need paid help, get a plan beforehand to both find the help and pay for it so you aren’t in a crisis like I was. (It will be much cheaper, too!) Also–and I think I have done a pretty good job about this–constantly educate your children so that they can develop an inner self confidence that is not dependent on what others think. Be really open with them about marginalization and oppression we face in the world, so they will learn to identify it and not take it personally when they are excluded. Also, as I have mentioned many times, there are always people out there that will support you, you just have to find them. You will have to look longer and harder than everyone else. Keep looking, keep educating, keep trying and you will find them. They might not be where you wish they would be, so maybe not at church or your kids’ school, but online folks are rooting you on. There is absolutely nothing wrong with developing internet relationships (and helping your kids safely do the same). People are out there and ready and willing to rally for you and your kids, but you will have to cast a wide net to find them. Keep casting and don’t give up. Finally, enjoy your beautiful family, no matter what the naysayers say. Know and appreciate in your heart what you have and know that you (and your kids) deserve the life you have built together like no one else ever could.
Writebook 