Pages from the Hartle Playbook

A few weeks ago I was visiting with some of my cousins whom I haven’t seen in a while.  They were mentioning how they had ben following my blog and found it so interesting.  Even though I have been blind for several years, many of my family members still seem to find the whole blindness thing fascinating and always have lots of questions for me, especially now that I am married to a blind man, and we live 1800 plus miles away from most of my family in a very different environment than the one in which I was raised.  During this last visit, Jesse and I were asked a lot of questions like how we go grocery shopping, how we get around to places, and how we organize things in our house.  WE get asked these and many other kinds of similar questions quite often, and try to do our best to educate people and help them see that we are just a normal family who just happen to do things a little differently.

For a while now, I have been reluctant to have my blog be a blog about us and our lives as blind people.  I figured readers would get enough of a glimpse into this world through the examples or experiences I shared in my posts about teaching blind children.  Besides, I figured no one would really find a blog about our daily lives as blind people interesting, especially as there are other similar blogs out there. But at the urging of my family and several followers, I have finally decided to focus a bit more on our everyday lives as blind people.  So, from time to time, I will share “Pages from the Hartle Playbook”.  These posts will be focused specifically on how we deal with everyday life as blind people, or in short, make it on our own playground.  I hope you enjoy them.  Please let me know what you think.

This week we celebrated a few little milestones in our home.  We celebrated our third wedding anniversary, and we bought a house.  Ok, so we won’t officially own the house for a few more weeks, but we got the official ok that it was ours and that everything had gone through this week.  I’m not sure what the customary gift for third anniversaries is but I think a house is a pretty good one.  (Good luck trying to top that one next year sweetheart.)  Anyway, whether we like to admit it or not, blindness plays into many aspects of our lives.  One of the main reasons we bought this house was because of its location and proximity to public transportation and other locations.  Since neither one of us can drive, this was a huge factor.  WE also wanted something outside of the city with a yard that was bigger than a postage stamp, not a row house, and where you could actually hear birds instead of sirens.  One of the biggest challenges for us was the fact that most of the kinds of areas where we would like to live do not have public transportation, or if they do, it is quite limited.  The other problem was that most of the newer homes are in these neighborhoods, so trying to find something that is newer and not needing a lot of fixing up is a little challenging, and when you are lucky enough to do so, it’s usually way out of a reasonable price range as the prices of houses in Maryland are still outrageous!

After quite a while of looking, we finally found something we think will work out well for us.  WE found a great neighborhood in the county.  It will take Jesse a little longer to travel to and from work, (about an hour and 15 mins.—yes that sounds like a lot but it’s about par for a major metropolis area like Baltimore and Washington D.C., even if you drive) Right now we only live about four miles from his office and it takes him almost an hour to get home most days anyway because of traffic in the city.  He will have the option of taking the lightrail which will speed things up a bit.  WE are about a 10-15 minute walk from the light rail station, and there is a bus stop for a major route at the bottom of our street which runs about every ten minutes daily.  This bus route also goes to the lightrail, and along the main downtown route of the area to which we are moving, making grocery stores, pharmacies, the library, mall, and several other stores and restaurants very accessible.  There is even a county cab company which charges less than Yellow cab does in the city, so this will come in handy on rainy days, or when we can’t take a bus or the light rail somewhere.  The best part is that the house has a full-size yard, is in a safe, quiet neighborhood, and has been completely remodeled  like new.  WE really lucked out and feel very blessed to have found it.  Hopefully it will live up to our expectations.

Two weekends ago, we went up to the neighborhood and just walked around for a couple hours scoping out the area (what sighted people would probably consider a “drive by”.)   I think we should call it a walk-about.  We found where the bus stops were, where the best places to cross since the main road is quite a busy one, located land marks like how many streets and drive ways we cross from the main road down our street to the house, and checked out what businesses were right there along the main road within a six block or so span.  WE even found this great deli for lunch which we probably would have never gone to on our own, but since it was close and we Swere hungry, we stopped in.

Since we can’t read the signs on the businesses, we have to ask a passer-by to tell us what is near-by, or else go in and find out.  I should say we did have some idea of what was around since we take the light rail to there a lot to go to the mall, and we did drive around with the realtor and ask her to tell us what was near-by, but it’s a little different when you are actually having to walk it and find things yourself.  .  WE do this kind of thing a lot when we try out a new area for the first time and it’s actually kind of fun.  It’s like putting a puzzle together because we figure out different routes of how to get to something, or get little pieces of information that we string together to make a map in our minds of what the area looks like.  Sometime I’ll have to tell you about our trips to NYC, Bar Harbor, Canada, or Disney World as the same strategies and skills can work just about anywhere.  .  Some may think it takes a lot of time or worry that you are only covering a small area at a time, or think that it would just be easier to have a sighted person always take you somewhere, but we actually really enjoy it.  It ends up being great time together too, and like I said, it’s actually kind of fun.

Anyway, we are pretty excited for this new chapter for our family.  I know there will be many more adventures to come and lots of great blindness stories I’m sure.  So there you have it, a page out of the Hartle playbook.

Blowing the Whistle: Not So Fair Wages

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.

The issue I’m about to tell you sounds like something out of the early 1900’s, but unfortunately, it is something that is taking place today, 2012, all across the country.  Did you know that it is perfectly legal for persons with disabilities to be paid less than the minimum wage?  This means that businesses can pay less than $7.25 to someone with a disability for work they would otherwise pay a sighted person at least minimum wage to perform.  It is aggravating to me that just because someone is blind, his or her work is not valued at the same rate as a sighted person.  Of course there are many seemingly plausible arguments in support of this practice.    For example, persons with disabilities cannot produce at the same rate as a non-disabled person (i.e., a blind person cannot produce at the same rate as a sighted person); persons with disabilities receive social security benefits so paying them less helps ensure that their benefits will not be reduced, or because most of these organizations are non-profits (like Good Will Industries for example) they simply cannot afford to pay the workers with disabilities the minimum wage despite the fact that their CEO makes over $500 thousand a year.  Ironically, Good Will’s CEO happens to be blind, so you would think that he would be more empathetic to providing fair wages for his peers.  Additionally, these organizations say that if they had to pay persons with disabilities the minimum wage, they would have to lay off some staff to be able to afford this and therefore “deny” those who are laid off “the “dignity of having a job.” But tell me, what is dignified about being paid $0.16 an hour?  Yes, this is an actual documented wage.

I would encourage you to take a few minutes to learn more about this issue.  Please visit The Fare Wages for Workers with Disabilities Act website to learn more.  I would also encourage you to read a letter to The U.S. House of Representatives regarding this issue.  Then, if you really want to make a difference, please contact your representative and encourage them to vote in favor of H.R. 3086.  All it takes is a short email or phone call to his/her office.  Let’s blow the whistle on inequality!

Essential Elements for Success#3: The Big Toy–“Blending In”

It is my opinion that there are five essential elements needed for a successful playground: swings, monkey bars, a big toy (complete with slide), kickball field, and tetor-tautor. Without these elements a playground is just, well…not as great as it could be. Similarly, there are five elements for success which I believe help blind individuals to be great. They are qualities which parents and teachers should help foster in blind children to help them navigate life’s playgrounds as successfully as possible. Over the next few posts, I will be introducing you to all five of these elements. So, here is our third element.

I’ve spent a lot of time since my daughter was born going to playgrounds around the area, and in this time, I’ve come to observe two things: one,there is always at least one big toy located right smack in the heart of the playground,, and two, it’s always crawling with children no matter what time of day you go.  Even the little rinky-dink playground down the street from me (hardly worthy of being called such seeing as it has no grass, no swings, and no shade) has a big toy and it also usually has a handful of children playing on it.  These big toys are like little social hot spots for children much like clubs or restaurants are for adults except that happy hour usually takes place between 9 a.m. and Noon.

So what does any of this have to do with blindness?  Let me explain.  Big toys are the one place on the playground where children have to interact with each other.  Think about it.  Children can swing alone, bounce a ball alone, jump rope alone, or sit on the grass alone, but on the big toy, it’s pretty hard not to interact with others.  Even if a child really wants to play solo on a big toy, there is still a minimal level of interaction which has to take place there with other children whether it’s turn-taking on the slide or passing by someone on the bridge.  Even when children are playing alone, it usually doesn’t last long.  Once I saw a child pretending that he was driving a boat with a large steering wheel only to see another unfamiliar child come up unsolicited and start playing with him.  Frankly, interacting with others makes the whole big toy experience that much better.   The other fascinating aspect to big toys is all the social learning and networking that takes place on them.  Next time you are at a park, take a few minutes to observe the interactions between children and you’ll see what I mean.  There are all these little interactions going on, rules being taught, knowledge being shared, and instructions being given on what is and is not acceptable; e.g., if you are not sharing, someone will call you out on it.  If you are picking your nose, someone will tell you that is gross.  Which brings us to our third element for success: blending in.

Blending in refers to one’s ability to fit in socially, or to behave in ways that are socially appropriate.  Blending in is much bigger than hair styles, brand names, or the latest slang words.  .  If we want our blind children to make it on the playground, we have to make sure they know how to interact and play on the big toy with all the other kids.  This means, knowing how to fit in socially with their peers and the world around them.  .  We have to help our children learn what is and is not socially appropriate and hold them to the same expectations we would any other child.  The reality is that we live in a world where first impressions and visual observations prevail, and people are labeled for better or worse.  WE want our children to be accepted and the kind of kid others want to hang out with because of who he or she is and not out of obligation to “be nice to the blind kid.”    WE also want to prevent labels from being placed unfairly on our children as the “weird kid”, or “special kid.” WE want our children to feel comfortable playing on the playground rather than feeling relegated to play solo on the grass.  So in order to help our children “blend in on the big toy”, we have to help them understand what social behaviors are appropriate or acceptable in various situations so that they at least have all the information available to them.  Then if they choose to not adhere to some of these “social expectations, it will be for some other reason and not “just because they are blind and don’t know any better.” So, here are a few areas where we may want to pay attention to how our blind children interact or stack up to their peers.  Keep in mind that we could go into much more detail about each of these things, but I’ll try to just hit some of the biggest aspects.

*Using Appropriate Table Manners:

Our blind children should be expected to use silverware appropriately, cut their own food (when age appropriate to do so like their peers do), feed themselves, and should know not to use their fingers (unless it’s a finger food) to locate food on their plates, or  put food on a utensil.  I’ve also observed some low vision individuals putting their face down right next to their plate so they can see what they are eating or so they can scoop food into their mouths easier—not good.  All these practices look extremely weird to others and even a little gross sometimes.  It doesn’t really send a positive message to one’s peers either.  There are alternative techniques which can be used when eating without any vision and I encourage you to ask other blind people who you believe have good manners to help you in teaching your child.  You may think, “What’s the harm if my child uses their fingers to find food on their plate instead of their fork, or if he/she puts her face a little closer?  The issue is that this sends one of two messages to others around them.  First, either others will think they do these things because they are blind and therefore aren’t equal to sighted people or as capable as sighted people–not a message we want to promote,, or second, it will result in our blind children being labeled as weird, messy, or different and maybe even ostracized.  Let’s face it, as much as we like to hope that people are kind and altruistic, other kids aren’t going to want to “hang out” with someone whose food they have to cut for them, or want to be seen with the “weird kid” in the lunch room.

*Dress and Appearance:

Please keep in mind that I am not suggesting that our blind children have to be fashionistas or have the latest hair style, but it is important that their dress and grooming reflect what would be accepted by their peers—at least within reason.  .  Again, we want to make sure our children at least know what the options are, or how to find out what is or is not “in” so they can make their own decisions rather than the decision being made by default just because they are blind.  For example, let’s say all the girls are wearing their hair in side pony tails.  If your daughter was sighted, she would see this and then be able to make her own choice as to whether or not she wants to wear her hair this way.  But, since she is blind, it is important that she learn to talk to her friends or siblings to find out what hairstyles are popular right now so she can still make her own decision.  Another thing to keep in mind when it comes to trends is that knowing what trends are in also helps our children be able to communicate with their peers.  For example, if all the girls in your daughters class are talking about how hot cat-eye sun glasses are and your daughter doesn’t know what this means, she will have a difficult time blending in with her peers since she can’t really be part of the conversation.  You may have to help your child develop the skill of asking questions about these kinds of things with their peers.  Another idea is to help your child research things they hear their friends or classmates talking about.    This idea applies more to teens, but you may want to encourage your child to follow a fashion blog or review websites or articles to learn what the latest styles are in fashion, make up, or hair  as these often give good verbal descriptions  and sometimes step by step instructions.  I noticed that my husband knows a lot about trends in athletic ware which are more mainstream in fashion right now because he hears about it from commentators when he watches ESPN even though he can’t see what people are wearing.  It comes in handy for him sometimes in conversations with his friends too and they are impressed that he seems so “with it.”

Equally, it is important that we help teach our children concepts like what kinds of colors, patterns, and fabrics go together and which ones don’t, i.e., your daughter shouldn’t wear her Old Navy flag t-shirt with her pink and purple floral shorts, or your son might want to think twice before donning his knee-high socks when he’s wearing shorts, or white socks with his dark dress pants.

*Social Cues and Gestures:

This area can be a little tricky because sometimes we don’t know what our children don’t know or miss out on since we may take some of these things for granite. For example, I know of a blind adult who didn’t know that you raised your right hand to a forty-five degree angle when you made an oath on a Bible.  He just knew you put your hand on the Bible and thought that was all.  So, it is a good idea to watch for these kinds of things and then ask your child whether or not he knows what a specific gesture looks like.  Other physical cues which are good for our children to know when trying to blend in include things like making eye contact, i.e., turning your face in the direction of a person speaking even if you can’t see them or their eyes, (you’d be surprised at the number of sighted people I hear who find this disconcerting when they talk to a blind person even though they know the person can’t see ),  shaking hands, knowing how your arm looks when you are raising your hand in class, and shaking your head no or nodding yes just to name a few.  One other thing I notice a lot is how many blind people don’t face a presenter when in a public event like an auditorium or hall.  .  Often, they turn towards where the sound is coming which may be the speaker off to their side rather than the podium, or else they droop their head down as if looking in their lap rather than facing towards the presenter.   Again, you may wonder, “What’s the harm?” but as we live in a society which relies a great deal on body language as a form of communication, those kind of behaviors can often be misinterpreted as the person being uninterested, rude, or bored.  Additionally, if all the participants in a crowd are looking one way, and your child is facing a different direction, they are going to stick out, and not always in a positive way.

*Blindisms or Self Stimulating Behaviors:

Blindisms are specific physical behaviors often demonstrated primarily by blind individuals.  They include behaviors like rocking, eye poking, or head rolling (like from side to side or in a figure eight motion) to name a few.  Often these behaviors are excused away by the public and even some professionals as acceptable “just because the person is blind.” But the bottom line is that these behaviors are unbecoming to an individual, look strange or weird to the sighted public, and again don’t send a great message about blindness to the general public.  Think about whether or not you would allow these behaviors in your child if he or she were sighted.  The answer is probably not, so we should hold the same expectations for our blind children.  They really are just self stimulating behaviors usually demonstrated more frequently when a child is bored, upset, excited, or anxious.  These behaviors are exhibited by a blind person much like sucking on one’s thumb, nail biting, chewing on your lip, or fidgeting  are to other people.  These habits can be corrected and replaced with more acceptable social behaviors with time and practice.  Often with children, it is easy to create some kind of a secret word or prompt you can give your child when he or she starts engaging in one of these behaviors which can work as a trigger to remind them to stop this behavior as many times they are unaware that they are even doing it.  If you are thinking that these practices really aren’t that big of a deal, let me briefly share two things.  First, I know a young girl who engaged in eye poking so much when she was younger that she has permanently disfigured her eyes and face from this.  Secondly, imagine your child as an adult sitting in a job interview.  How do you think he is going to be perceived by his potential future employer if he is constantly rolling his head from side to side during a conversation?  Especially if there is another equally qualified sighted guy sitting outside the door waiting for his turn?

Remember earlier when I referred to big toys as social hot spots for children?  WE want to make sure our children have the tools and skills they need to blend in in these social hot spots whether it be in the classroom, scout group, sports team or on the school playground.  It is in these settings where children have the opportunity to engage in so many more social learning experiences than we could ever provide them just at home.  Ironically, it is through these kind of blending in on the “big toy” experiences where children ultimately discover the qualities that will later define them as an individual, and the skills that will aid them in making it on the ultimate playground—the real world.

        …

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.