For the second annual Blogging Against Disablism Day, I wanted to write a little bit about being a disabled parent. I asked myself, "What is different about disabled parenting vs. nondisabled parenting?" So much of it is exactly the same. But I came up with a few things that fit neatly into two categories. One is what I will call the "intrinsic" challenges of being a parent with a disability. (For any newbie readers out there, I am deafblind with some usable vision and hearing and my partner, D, is a C6 quadriplegic, and we have twin 2-year-old boys.) The other, I will label as "external." When I say "intrinsic," I refer to the actual disability-related stuff that affects our parenting, like the fact that I can't drive or that D can't pick up the kids or those kind of things. The external stuff is the Disablism part. The attitudes and opinions of others that affect how we parent, even though we try not to let it too much.
Most other people think the intrinsic stuff is the hard part. Although it can be challenging at times and you have to think a little harder and be more creative sometimes, the intrinsic stuff is easy. I honestly can't remember ever having a serious doubt that either my or D's disability would get in the way of us being capable and competent and in fact, good parents. Not one doubt. Ever. If I did have serious doubts, I wouldn't have done it. I knew there would be challenges. I knew that things would come up that would be a pain in the ass, but I always had every confidence in the both of us that we could handle everything that came along as far as disability and parenting.
I found ways to figure out whether the kids have diaper rash without seeing it. D found ways to hold the kids as a quadriplegic. I found ways to know if they are crying or getting into something. D found ways to play physical games with them by putting them on the bed or on the couch. We found ways to get the supplies we needed in the house like diapers and formula when we couldn't drive. We found ways to shop with two kids when we could. We work on communication with sign or by proximity to mom a lot. Naim signs a lot, but Aaron doesn't too much. Yet Aaron has the clearest and most precise speech of almost any two year old I know, and maybe that is by design. Maybe he figured out that he needed to speak more clearly for me to understand him. We are now working on walking out in the world without a stroller and going to the playground without losing each other.
As we work on adapting to parenting, the kids just naturally adapt to us. Naim now gets in his dad's lap any time he wants by stepping up onto D's prosthetic foot. He doesn't step on the other, still healing, foot. He's just learned that. They will hold up something from across the room to show dad, but will bring it over to me. They will also come over to me when they want to tell me something rather than yelling across the room. They are used to public transportation, and they are also used to having to wait for dad's ramp to deploy from the van and then marching on up and getting right into their car seats. Naim knows how every button that runs the automatic door and ramp works and often will put the ramp up when we are dropped off at my house. They happily use the ramp into my house as a slide for their trucks. Sometimes, when I don't get something they are trying to explain to me, they will take my hands and literally put them or point them to what they are talking about. At the park, we have check ins where we kind of play our own game of "Marco Polo." I say "Aaron!" and he says, "Mama!" and we do this a couple of times with each kid so everyone knows where everyone is. They tap my cane around the house and they like to go "UP!" in dad's tilt in space wheelchair. They can push themselves with the wheels of his manual chair. They are completely comfortable with our idiosyncrasies. They don't know any different.
There will be more challenges in the future, but also less. The kids will be able to just come to me at night if they are upset rather than me having to rig up a baby monitor to my bed-vibrating signaling system. They will understand their boundaries and not just wander off so much. They will be able to follow verbal directions from their father rather than having me have to step in and physically separate them from whatever bad thing they are into. They will be able to stay with him alone without me as backup. They will be able to read books to me rather than me struggling to find ways to read books to them. Old problems go away, and new ones will come up. We will surely have to find new adaptations and ways to communicate and have fun together as D's and my disabilities change. Transportation might be a continuing problem throughout their lives. I will not be able to participate in carpools the same way as other moms. We will have to find someone else to teach them to drive, things like that.
But one of the main problems I foresee coming up is not an intrinsic problem. It is an external one. Someday soon, they will realize that we are different. They will sense the stares, see and hear the comments, feel the judgments. They will start to comprehend that in the outside world, their parents are considered by many to be without dignity, incapable, and second-class. This will be hard for them because, to them, we are just their parents who they love and at least at this stage, can do no wrong. They will have to learn how to field intrusive questions and comments, teasing, and may even have to stand up for their right to stay in the loving care of their parents.
This is why the external stuff, the disablism, is so much harder to deal with as a disabled parent. The disability intrinsic stuff is a piece of cake compared to the fear that your kids will be taken away from you because of your disability. It lessens as the kids get older, I think, but the fear is always there. It has happened to others, it is happening. It is something that you have to be constantly vigilant about.
As a disabled parent, I can be a perfect parent, having never had a single problem with my kids (and for me, you can tack on 15 years of never having a single problem when caring for other people's children.) It won't matter. When you are disabled, society does not allow you to earn a track record. You can do something right a thousand times, and each time you do it again, you have to prove your ability as if you've never done it before. And if you've done it right a thousand times, and you screw up once? Game over. You may never get a second opportunity. I know not everybody approaches us in this manner, but enough do that it makes you fearful.
My web-buddy Shannon wrote once about "defensive parenting," which is a good way to describe it. Her family that consists of two moms and an adopted child of a different race can draw strong reactions in some people. When they travel, and have to stop at a roadside restaurant in a strange town, they worry about how they will be received and if their presence will bring them trouble. They have to carry their adoption papers and other legal documents with them to prove that they are their daughter's legal parents. No one just assumes this. If there was an accident or a problem, they have to be concerned that they will be allowed to make the appropriate medical decisions for each in the family, nor get somehow "legally" separated from their daughter. They have to parent defensively.
As disabled parents, we have some different issues, but in the back of your mind, fear is always there. For me, it came right into the forefront in the days following my children's births. I was a new mom recovering from an eye surgery and a cesarean, and had just given birth to 35 weeker twins. One of my twins struggled for a month with eating. In those six days that we were all hospitalized and my son was losing weight and not eating, it was not a medical problem. It was not a preemie problem. It was not a lactation problem. To hospital staff, it was a disability problem. I am the only one I have ever heard of that was told by a lactation specialist, "Don't breastfeed. You can't do it and I can't teach you." I did need some support and teaching, and it was not available for me. This was due to disability. Things got even more dire when a good portion of the nursing staff decided that D and I, if left to our own devices, would not be able to get the children fed and cared for and that social services should be brought in to consult. I cannot even begin to describe to you how being told something like this just almost kills you at your very soul. Not to mention the just sheer exhaustion of having to gear up for a fight when you are actually in need of support. Very luckily, we had some nurses on our side that fought for us. We were able to take our children home after six days, and our child was eating normal amounts within a month. We had several consultants and dietitians who came in and we tried different nipples and formulas and whatnot. Not one of the specialists could make that child eat. It was just a matter of getting as much in by hand at a time as you could and waiting for his rooting and sucking reflexes to come in, which happened just right before his real due date. But as you can see, when there is a problem with our children, we actually get LESS support sometimes than a nondisabled family would. We even have to fight for our rights to take care of the problem ourselves sometimes. We have to prove that the problem is just a typical childhood thing and not due to our disabilities. We are on our own a whole lot. Support is sometimes rare.
Many times, people are reluctant to give just the regular, everyday support to a disabled family that they might give to a nondisabled one. This is because of their feeling that their help will not be reciprocated and that they will be sucked into doing "all the work" for the disabled family who must not be able to do it on their own. Things like babysitting, rides, etc. are hard for us to come by. The ways that I can reciprocate are often not accepted. I feel competent that I could babysit, in the confines of my house and fenced yard, up to two or three other kids as well as my own. I tried to join a babysitting coop in my neighborhood and it was a no go. They were happy for me to join when we were talking through email and they did not know of my disability. Then after a small neighborhood gathering where I met the coordinator of the coop, I never heard from them again. I asked about it and was told that it just never got off the ground. Later, I talked to a mom at the park and she asked me why I wasn't in the coop. I commented about it getting started again and she said it had been pretty active since before I tried to join. These things are not unusual. I got a lot of this type of thing when I tried to teach at different schools. The thing that worries me is that my kids' friends may not be allowed to come over to my house to play and things like that. Again, I could show off my healthy, happy kids and even hundreds of others I have cared for through the years and it won't matter. It would be attributed to "luck" or the "grace of god" or whatnot. Not to my skills as a parent.
It is sometimes common for some disabled parents to lose the support they thought they had when they become parents. This is what happened to D and I with some members of his family, and I have also heard this from other disabled moms. It kind of feels like, if you stay in your place and don't want too much out of life, fine. We will help you with your little disability needs. But strive for too much? Take on more responsibility? Thats just being selfish and we won't support that. It is interesting to learn who among you has real disability prejudices and who doesn't. Parenting really kind of brought out who our real friends were. When I, in my role as a mother, was blamed for D's problems with his feet by some members of his family, it was like they were just waiting to find a thing to go wrong to prove that we couldn't cut it. They were waiting to say, "Gotcha! I told you so! We will now go eat a big hunk of Scheudenfreud Pie." We were not allowed to have a mistake like others are. When you are disabled, if you say you can do something, you better damned well make sure you are 100% perfect at it. You need to be ten times better using half the resources as anyone else to be called a success. People are waiting for and expecting you to fail.
I have heard other blind and disabled moms tell stories about people saying rude things to them on the street when they were visibly pregnant. You sometimes do not get much in the way of congratulations when you become a disabled parent. Many people mainly look shocked and concerned. Or they look at you as if you are a immature little 15 year old high school girl who just got knocked up in the back seat of her boyfriend's because she didn't think you could get pregnant your first time. They make comments like "Well, how are you gonna do this or that?" as if you had never given the matter any thought before and you just up and forgot you were disabled. You are looked upon as unwise, irresponsible, selfish, and incapable. It is especially hard when you are pregnant because you have nothing to show for your worthiness yet. Afterwords, you can at least point to your kids and say, "they are just fine, thank you."
The scrutiny is pretty palpable and is always with you to some extent when you are out in public. The other moms sit on the bench at the park and watch their kids from afar. I am up and walking around the playground at all times, sometimes even up on the play structure itself when need be. Sometimes moms will say, "come sit down! aren't you tired of following them around?" I have to judge what to say. Do I just smile politely and say, "oh, I'm fine," and shy away or do I tell them the truth. I can't see them very well, I can't hear them very well. Proximity is my tool." When I do fess up, or am forced to because my appearance gives me away, there is always this element of fear that goes along with that. Many times, I get a silent, uncomfortable stare, and then they go back to their groups of moms and talk in whispers. I am watched the remainder of the time.
Once, Naim fell off the jungle gym about two feet. There was a collective gasp from the crowd. Naim cried a bit but he was fine in two minutes. Soon after, a bunch of women left with their kids. A few stayed and talked to me and were nice. They told me that the other mothers didn't feel comfortable with me there because if something happened to my kids, they would feel responsible. We all just kind of laughed about it.
Another time, I was there alone with the kids. A woman with two leashed dogs came by and Aaron was watching them as he stood probably three feet from me. Then Naim called me because he had reached out and grabbed a fireman's pole thingy and then decided it was too far away (it was) and needed help getting down. I turned to help him, which took maybe 20 seconds, and when I turned back around, I had lost Aaron. I didn't know if he was 15 feet away or down the street, but he's a wanderer so I figured he was nearby. I decided to be quick about it and I asked the lady with the dogs if she saw a kid. It was weird, she kind of freaked out on me. "You lost your child? What does he look like? What was he wearing?" etc. etc. etc. This was taking up stupid amounts of time, so I said, "He's probably really nearby, he's been missing for less than a minute. Can you just take your eyeballs and do a 360 degree turn and see if you see a small child? I'm visually impaired."
"You're visually impaired!" she yelped as she frantically ran around searching. She got farther away from me and was still talking and I could no longer understand her. So then I had to fess up that I was deaf. This about sent her into cardiac arrest and she went on about how she was so freaked out. She kept asking me if I was freaked out, like I wasn't freaked out enough or something. I had a job to do, there was no time to freak out. And if anything was freaking me out it was that this woman was totally wasting precious time asking me if I was freaked out. I could see in my mind, Aaron getting farther and farther away. She asked me again what he looked like and I was holding Naim and said, "like him, they are twins. Same clothes, but Aaron's are red." And then she asked me if I was sure they were red, like I didn't know what I dressed my kid in.
At this point, Aaron saunters down the little alleyway behind the playground. All total, he was probably missing for under three minutes. And in that whole time, I spent it mostly dealing with this woman's freak out instead of looking for my child. When I found him, she went on about how lucky I was that he came back. Well, yes. But he probably, I strongly suspect, was no more than a few feet down that alley in the first place. He was likely looking at flowers or rocks or something or other and heard our whole conversation. She said to me, "I think you treat this a little too casually. I don't understand why you weren't more freaked out. I don't think you should come to the park without others to help you. If I hadn't been here..." If she hadn't been there, I probably would have found him faster. It makes me wary to ever ask another random sighted person for help again. At least not until I've done my own little 5 minute search. Geez.
And the kids wandering off is a concern for me. And it is something that I am constantly aware of and problem-solving on. But I am pretty sure I am not the only mother in the world who lost track of her child for 3 minutes. It would have been nice to get some help instead of a scolding, you know? But even to write this I feel like I will be judged. Someone reading this will be OhMyGodding about me losing my kid. The four thousand other times we've gone out in the neighborhood before and since then that I've kept track of them won't count for anything.
I think sometimes, nondisabled people are threatened by the thought of disabled people being successful at doing something difficult. They don't want to have a job that "is so easy a blind person could do it." They don't want to think of some of the difficult challenges of parenting as something that any crazy deafblind person or quadriplegic should have the right to do. Some people just get into other people's business and put them down as a way to lift themselves up. I think a lot of disablism in any variety is mostly due to insecurity that people have in themselves. As a disabled parent, you have to work very hard to be secure in your own decisions and abilities because no one else is, and your kids need to see that you are. It is tough sometimes because we have the same anxieties and problems as every other parent, but we have to be cautious about who we express those anxieties to. There is always that fear that social services will be called.
Part of the reason I think about homeschooling my kids is to keep us out of that fray a bit. At home, we are just a normally functioning, happy, comfortable loving family. Out in public, you have to consider the judgments of others and how you will be perceived. I don't want to shelter my kids in the house their whole lives in the slightest. Homeschooling certainly doesn't eliminate public exposure by a long shot. You meet a larger variety of people that way. Putting myself out there is potentially dangerous as well. So it is striking a balance between sheltering your kids too much and protecting them from potentially being taken from us and dumped in the foster care system or something. I have to be responsible for not putting them in that kind of harms way that disablism provides and exposing them to more of this crap. Soon they are going to start understanding these lovely little exchanges I have with people. I don't think that people think about the damage they might inflict on a small child by constantly insisting that their parents, who they trust to take care of them, can't take care of them. Managing this is the single most difficult thing about parenting with a disability.
To put all of this in perspective, I do want to explain that there are many, many nondisabled people who are very open and accepting of D and I as parents. In fact, being a parent has in some ways closed the gap that we have with nondisabled people. We can talk about our children and we have the same concerns and anxieties and joys. The common bond of parenting very often trumps any other differences we have. In this way, parenting has enhanced the disability experience by bringing us closer to people that we might not have bonded with otherwise. I have found, both on the web and in real life, a strong bond with lesbian moms. I wasn't hanging out with a bunch of lesbian moms before I was a parent, so that has been cool We share some of the same concerns and joys. Also, there have been plenty of just plain old neighborhood soccer moms at the playground who have been just as nice as could be. So I don't want to give the impression that this kind of stuff happens at every turn.
The problem is, it happens just enough to screw with your head. I can't give you exact data, but say it happens every 8th conversation or maybe every 10th. It happens enough to make you expect it and brace for it and be cautious of it. This is sad, because then you kind of shy away from social opportunities and miss chances to meet some great people out there. Forcing yourself to sort of face the prejudices and deal with them as they come while somehow attempting to protect my children from them is, for me, by far the biggest challenge of being a disabled parent.
Maybe after we have another million Blogging Against Disablism Days, to the point where we don't need them anymore, this problem will be eliminated. I fantasize about this. I don't really ever fantasize about being cured and being able to see and hear again, nor D being able to walk, I fantasize about making trips to the park without worrying about defensive parenting.