Tag: parenting

Public Attitudes, Misconceptions, and Advocacy

Babies’ Births and Blindness

Mary Jo Hartle

2016-08-09-19-23-17Well, in the event that you really enjoy reading this blog and have missed posts, I have a really good reason for not posting in a while. WE have been busy with a newborn and in the thick of adjusting to the “new normal” of life with three children, one of whom also started Kindergarten this year-a whole other blog post. Three months later, I’m finally feeling like I’m starting to come up for air and mastering our “new normal” routine.

We welcomed our third child, Brayden Alexander Hartle on Tuesday, August 9. He weighed in at 9.93 lbs. and was somewhere between 20-23 inches long , beating out his two older sibs by a few ounces-yes, we make really big, but long and skinny babies. He is quite the little cutie and we’re so happy to have him join our family.

I ended up having a scheduled C-section with him. This was my third C-section. Our first child was brow presenting, instead of crowning, so after about 20 hours of being induced and in labor, her delivery resulted in a C-section. . When our second child came along, he was breech at one point and estimated to be somewhere between nine and ten pounds, so we ruled out a potential “trial of labor after cesarean” due to possible risk for complications because of his size. By the time this little one came around, I pretty much didn’t have any choice but to have another C-section. IN any case, I guess it really doesn’t matter how they get here, just that they do and that they are healthy. We’ve been so blessed each time.

One advantage to knowing when you’re going to deliver is that it allows you to plan a bit better. Since Jesse and I can’t drive, this gives us a little bit of relief to know that the possibility for making a 2 a.m. Uber ride to the hospital is low. I’m sure our friends who are on the emergency call list appreciate it too.

We have delivered all three children at the University Of Maryland Medical Center, in the exact same O.R. even (wish I’d thought to get a picture of myself standing outside the room prior to this last delivery for sentimental purposes. Each experience has been positive. Given that the focus of this blog is on blind parenting issues, I thought I’d take a few minutes to share some related thoughts with respect to our deliveries and our blindness because there is always a little bit of apprehension in the back of our minds about what our experience will be like. Blindness always comes into play in some form or fashion.

Prior to our first child’s birth in 2011, we were pretty nervous about what our experience would be. We’d heard some negative things from blind friends. At that time, there was also a custody case going on in Missouri where a baby had been removed from the custody of her two blind parents shortly after being born, purely on the fact that a hospital social worker expressed some concern about the parents’ abilities. (Just as an added note, at that time here in the state of Maryland, it was also legal for children to be removed from a parents’ custody purely on the basis that the parent was blind with no need for evidence of harm or risk to the child( Since 2011, state legislation has been enacted that prevents this . I wrote a testimonial for a state congressional hearing which you can read here.) Delivering a baby is scary enough without bringing all these other fears into the mix. So, we tried to be proactive. We spent a bit of time working with our doctor and even spoke to the head nurse of the Labor and delivery unit prior to our daughter’s birth to help dispel some misconceptions and hopefully make our experience a positive one. I am grateful to report that each have been. I think our own ability to advocate for ourselves, our skills training, and demonstration of our abilities have been the prevailing factors in making this so. I also need to give credit to the advocacy of our doctor. We’ve been so blessed to have a great doctor who has followed all three pregnancies and who has become like a part of our family. If you’ll indulge me for a moment, I’d just like to say that finding this doctor has been like an answer to prayers. Bringing a child into the world is such a scary, challenging, exciting, emotional, intimate experience and I’m so grateful that we’ve been able to work with her. She originally started out as just my regular physician about ten years ago, but because she is a family medicine doctor, she’s now become Jesse’s doctor and our pediatrician. She’s also been able to follow all my pregnancies, was present for each birth to support me—even rearranging her schedule just for us-, and she would have delivered each child had I not had C-sections. So we really feel like she knows our family and is our #1 supporter.

Each delivery, we’ve ended up staying in the hospital for an average of about four days (the protocol for a C-section is two or three, but we have stayed longer because our children all had Jaundice . Typically, medical professionals’ views or training when it comes to blindness are more focused on how to correct the problem rather than looking forward to how one would live successfully with it, so this allows us a lot of opportunities to help educate others on the capabilities of blind people. I’ll admit, each time we’ve felt a little bit like we were under a magnifying glass. Despite this, it’s still been a great opportunity for us and felt a bit like a public education mission in that we can demonstrate the capabilities of blind individuals. We’ve been asked a lot of questions about how we do certain things; i.e., how do you get around, how do you change a diaper, how do you keep track of your children, how will you deal with car seats, etc. We’ve been able to share some of our methods and talk about the kind of training available to those with vision loss that helps us with everyday life. We get told that we’re “amazing” or “inspiring” most of the time, which is nice to hear, but truthfully, we just want to help raise public expectations on the abilities of blind people to live normal lives, including having and raising a family.

We did have a bit of an issue this last time with one of our nurses which I want to share. I felt a bit uncomfortable with her because of the way she doubted my abilities by questioning some of my actions. For example, she didn’t want me to pick up the baby from the bassinet because she was afraid I would drop him. Instead, she wanted me to page her to get him. At first, her concern seemed slightly relevant, but I assured her that my husband (who was asleep in the chair next to me) was staying with me and could help with this. She continued to seem uncomfortable with this and I finally realized from her questions that she was concerned about the safety of the baby with both of us being blind, and our ability to locate the baby and the bassinet. I began to feel a bit irritated partly because it was late and I was physically uncomfortable, but mainly because I felt like I had to defend myself to her. I finally had to explain to her that I had enough vision to locate the bassinet and agree to call her if I needed help. I felt annoyed that it took me reassuring her that I had enough vision to see the baby in the bassinet because it felt like throwing my very capable, but practically totally blind husband under the bus. Let me assure you that it’s not too difficult to feel where a large object placed next to your bed is, nor is it hard to locate a crying baby. And if you’re worried about misjudging the placement of the baby back into the bassinet without vision, I can testify that natural instincts will kick in and you won’t release the baby until both of your supporting hands feel a flat surface under the baby…at least in my experience.

We had one or two other little misunderstandings from her and asked our doctor if there was a way to request that she not be assigned as our nurse again. . We’re generally pretty easy going and not confrontational, but she made both Jesse and I feel uncomfortable. Anyway, the story has a happy ending. Towards the end of her shift, she started talking to us and asking us some questions and seemed to begin to change her perception. In fact, the next night she came into our room and told us that she was not assigned to us that evening but wanted to say hi. (We honestly don’t know if this was coincidence or arranged), and she told us that she really appreciated the opportunity to meet us and admired us for what we were doing. It just goes to show you that actions speak louder than words, and that people’s perceptions can be changed.

So, there you have it…a brief glimpse into our birth experiences. We are so grateful for the privilege of being parents. It is honestly the most challenging, sleep-depriving, stressful experience ever, but the most joyous and worth every moment. Thanks for reading.

 

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Mary Jo Hartle

Most of us know what it was like to be on the playground when the playground monitor blew her whistle. This usually meant one of two things: either someone’s actions were in need of correcting, or recess was over. Sometimes I wish I could “blow the whistle” on the actions of others with respect to blindness, or just bring an end to some of society’s misconceptions and poor attitudes. So, here is my attempt at “blowing the whistle” on a recent observation in an effort to help change perceptions of blindness.

My husband and I are in the process of trying to buy a home. A couple of weeks ago we put an offer on a house which we really liked. One of the major pluses to this particular house for us is its convenient location to public transportation options while still being in a nice suburban area. When the other realtor for the seller of this house learned that both my husband and I are blind, she immediately became concerned about how we would navigate the stairs in the house. (Insert whistle blow here) I should mention that this house is a split level with four different levels. It was a little condescending that our own opinion in feeling comfortable enough with the house to put an offer on it wasn’t acceptable to her and that she felt the need to point this fact out to us about the stairs as if we hadn’t noticed them. When we learned of this, we were a little surprised, slightly offended, and concerned that this might dissuade the seller from accepting our offer. I mean, she wouldn’t want to have our several broken bones and frequent trips to the emergency room on her conscience right? Fortunately our realtor has worked with blind colleagues of ours so is no stranger to the capabilities of blind people, and helped to diffuse the situation some. Unfortunately, this is not a new think to us. So often people ask us if we want to take the elevator, or show us to ramp entrances at buildings to avoid us going up stairs when really they aren’t that big of a deal. We’ve even had bus drivers insist on lowering the ramp to avoid us taking the two steps to get on or off of a bus. The reality is that the world isn’t flat, asColumbusproved, and our environment isn’t always going to conform to our needs. I’m not a medical professional, but I’m pretty sure blindness generally doesn’t automatically mean our legs don’t work either. We have to learn to get around our environment, even those areas which may present challenges. navigating stairs is just par for the course. Learning how to do it effectively is the key. Having said that, I do not mean to be insensitive to individuals who are in wheel chairs or have legitimate mobility issues and who are blind. Rather, I just want to point out the silly misconception that the sighted public often has that blindness is equated to an inability to navigate any raised elevation safely.

Really, stairs aren’t that big of a deal, especially when you use a cane. Think about how often you look at stairs when you go up and down them. Once you see the first one, the rest are pretty easy to figure out right? Of course we won’t use a cane around our own home, but the fact that it is our own home alone means that we will be familiar with it and know where the stairs are so that we can avoid falling down them. Additionally, I think the fact that we can cross streets and locate bus stops (normal things a blind person should be able to do anyway) should be a pretty good indicator that we can manage a few stairs successfully.

Well, fortunately for us, our offer was accepted and we have now started down the path to home ownership. YAE!!! But another misconception of blindness would rear its ugly head again a week later. On the day of our inspection, we met the seller’s realtor in person and were peppered with questions by her as to how we would manage living in this house and the area with “our disability”. Her first question was whether or not someone comes and helps us out, especially with our one-year-old daughter. She also inquired how we would get to the grocery store or to other areas in the neighborhood. I have to admit that I felt a little bit like our purchase of the house was contingent on how well we answered these questions and could defend our abilities. How often do sighted people get asked how they will manage these kinds of tasks when they are buying a home? Why couldn’t we have the same respect? Curiosity is one thing, but this was just concern and doubt on her part. She also was curious as to whether or not our daughter is blind (a question we get quite often when people learn that both of us are blind), and then she gave the typical response we hear from people when they find out that she is not, “Oh, that is such a blessing; I’m sure she will be a great help to you both since she can see.”

It is sometimes really hard not to be offended by these kinds of questions and to not want to just shake the person silly for being so closed-minded or clueless, but I realize that people really do mean well, they just don’t get it sometimes. Like for example, yes, it is great that our daughter can see as we wouldn’t want to wish blindness on her or anyone else for that matter, but this doesn’t mean that our blindness is a terrible tragedy. Incidentally, she’s not the greatest at crossing streets independently yet, and it will be at least three to five years before she is able to come in handy as a proficient reader and another fifteen before she is able to drive, so in the meantime, we will have to find other ways of managing without her help, just like we have done for years before she was born. Truth be told, we just want her to be a normal kid and not have to worry about taking care of her blind parents—at least until we are old and senile. In defense of this realtor, and the hundreds of others who ask such questions, we really do understand that people mean well, or are genuinely curious, but just don’t know about blindness or the capabilities of blind people who have skills, good attitudes, and high expectations for themselves. Aside from our slightly offended feelings, we did welcome some of her curiosity as it gave us the opportunity to educate her on the capabilities of blind people and hopefully we were able to change her perspectives, even if just a little. . WE told her how we travel around the country to see our family, take the bus or a cab to the grocery store, label things in Braille, organize our closets and cupboards, put bells on our daughter’s shoes so we can hear where she is, and so on. WE also told her a little bit about our orientation and mobility training and how we will get around in a house with four levels and around the neighborhood. I think by the time we wrapped up our conversation, she was thinking we were pretty amazing, which isn’t quite the impression we wanted to give her either, but hopefully she has some new perspectives about blindness from this experience. The bottom line is that blind people just want the same respect and expectations which you would offer to any other person on the playground.