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  • Posted on August 9, 2013 at 10:00 AM

When we first bought our house, we chose it in part because we loved the lay-out and we loved the woodwork. Enter the front door and go straight to go upstairs or turn left to enter the living room. But right there, between the living room and the front door, is a heavy wooden door tucked away in a pocket in the wall. Slide that door out and put a barrier between the upstairs and the downstairs, which can be very handy for our family.

A lot of people think that because we have three children with autism we have three children with the same needs. They don’t realize that the boys’ needs often conflict. For example, there are times when Ben needs quiet and Alex needs to make noise. We put barriers between them so both boys can have their needs met. Otherwise, fighting ensues. At times like these, that door is a blessing.

Other times, however, the door just seems like a barrier. Like when I come home with my arms full of groceries and I manage to enter the front door, only to be blocked further by the sliding door. Or when I’m coming downstairs, still more asleep than awake, and (almost) walk in to the sliding door, because I don’t quite see that it’s closed to me.

We have another sliding door on the main level. This one is between the playroom and the bigger boys’ new room (formerly the den). To keep his younger brothers out, Willy often shuts the door at night during those rare times when he goes to bed first. The problem is that we only have one bathroom on the main floor and it’s on the bedroom side of that sliding door. And that door has gotten rather noisy and uncooperative after Brandon and Willy roughed it up. So, when I have to go to the bathroom, I have to disturb Willy getting through that barrier.

It occurred to me that there’s a metaphor in these doors. Disability advocates are concerned with barriers. As advocates, we talk about how barriers most people in society can navigate easily can become overly limiting or even hazardous to people with disabilities. As advocates, we talk about tearing down barriers.

Once again annoyed that I had to navigate the sliding door with an armful of groceries, I resented the barrier. Once again annoyed that I had to navigate the sliding door when I needed to use the bathroom rather urgently, I resented the barrier. But after a day of resenting these barriers, I remembered that they serve a purpose. Not only that, but we bought this house because these sliding doors—these barriers—serve a purpose, a very important and valued purpose in our family.

Maybe it’s because I’m reading Dale Carnegie’s How to Win Friends and Influence People, which is a strangely enlightening look at neurotypical thinking. Maybe it’s because I’ve been thinking so much about what I’d like my future non-profit organization to do for people. Whatever the reason, it occurred to me that all these things we advocates refer to as barriers are also sliding doors. They serve a purpose. They are navigable to the people who designed them.

The barriers are a problem, because they are not inclusive and because they do keep people out. Our society is full of such barriers/sliding doors and the sum total is more disabling than the disabilities of those people who are kept out. But keeping people out is not their function. It’s not their purpose. Navigating barriers like these asserts a level of control over events and puts that control in the hands of the people who designed and used these barriers. So, when we talk about tearing down barriers we are rejecting not only the barrier, but the purpose the barrier was designed to serve and the people who designed what is from their own perspective a sliding door.

In short, it’s an attack. We’re saying they are wrong, selfish, thoughtless, and exclusive. Whether that’s true or not, from our perspective, it’s not true from their perspective. Even if they recognize that there is truth to the attack from our perspective, they’ll have trouble admitting it because we’ve put them on the defensive.

Instead of tearing down barriers, maybe what we need to do is work together to build better sliding doors.

The Burden of Bureaucracy

  • Posted on November 10, 2009 at 5:53 PM

With the threat of swine flu, our local school district is taking extra precautions to remind parents to keep their children home when experiencing flu-like symptoms.  This notice was sent home on a bright red flyer with all three boys.  The school system has a standing policy, which I’ve known since the first started attending Early Childhood, to keep children home for 24-hours after the symptoms of illness are gone.

Pretty much since this school year started, Ben has been sent home on a fairly regular basis due to vomiting.  Alex has also been sent home due to vomiting, but with less regularity.  Due to school policies, each time one of my children vomited, they would lose a partial-day and a full-day of school.  Normally, I wouldn’t object to this arbitrary rule.  I don’t believe it does much to alleviate the spread of contagions, because each contagion has its own window of opportunity.  However, at the very least, it is a measure to ensure the child is actually well enough to attend school and benefit from the experience.

That is to say, normally I would not object, but…

1) Both Alex and Ben have a history of vomiting when they are not ill.  For Alex, this history is well-documented and has been observed and verified by medical practitioners and school staff.  Ben has exhibited similar behavior, but his experiences are less well-documented because this behavior has occurred with much less frequency—until now.

2) I recently received a letter from the school system chastising me for keeping my children home.  Despite the school’s demands I keep my children home at any significant sign of illness, despite my compliance with these demands, and despite my telephone calls to report the nature of my child’s absence and the symptoms related to these absences, the school has elected to count the boys’ absences due to illness as “parent excused absences.”

Parent excused absences are considered discretionary on the part of the parent.  If you take your child on vacation during a regularly scheduled school day, then that day counts as a parent excused absence.  There are consequences if you use up too many of these days, because you’re interfering with your legal obligation to send your child to school.  Days your child stay home due to illness are not supposed to be counted as discretionary days of absence, because your child is not allowed to attend school as per school policies.  Yet, I’ve received a letter challenging my choice to keep my children home with such frequency.

Why were these days mislabeled as discretionary absences?  When I kept my children home sick, I called into the school to report the absence, the reason for the absence, and the symptoms my children were experiencing—all done per the instructions I received in the various flyers sent home.  What I did not do is drag my children to their pediatrician, expose other patients to the contagion, just so the doctor could say, “Yep.  Your child is definitely ill.  Here’s your note.”  Apparently, I’m expected to do exactly that.  To avoid this scenario, I have been instructed by a school secretary to call my doctor (versus bringing my children to the clinic) and the doctor will fax over the same note.  Thus, I avoid false accusations of keeping my children home at my own discretion.

The only justification I can imagine for this procedure is the undisclosed psychic training doctor’s receive as part of their medical schooling.  Because doctors receive this training, they’ll know I’m being truthful when I say my children are ill.  Because school staff does not receive this training, they must assume I’m a lying scumbag who keeps my children home to thwart the school’s master agenda to educate the next generation.  Since I do not believe doctors receive psychic training in medical school, since I do believe both the doctor’s time and my time is too valuable to waste for the sake of mindless bureaucracy, since I do not believe it is conducive for the school to assume a parent is lying regarding the reasons for absence, and since I do not believe it is ethical for the school to require such a procedure but not post it with its other requirements, I elect not to comply.

 Now, I could simply leave this post here: a rant to a situation that aggravates and frustrates me.  On the surface, it’s just that.  However, there is an underlying issue not readily recognized.  I perceive this as “bureaucratic non-sense,” I find it aggravating, stressful, and unnecessarily time-consuming.  I find the need to challenge this situation and bring it to the attention of those positioned in places of authority within the school system.  When I look at situations like these, I gravitate to the default I-me position.  I see this from my own perspective and I deal with it accordingly.

I’m not confessing this from a position of guilt, but to highlight a different kind of absence.  I’m the one who handles the bureaucratic barriers my family faces and must navigate.  When the school makes an unfair decision, I deal with it.  When it’s time to negotiate the IEP, I negotiate.  When it’s time to fill out paperwork, I enter the information.  When it’s time to decide which barriers are worth challenging, I do it.  When there are interruptions in services, I fix them.  I make the telephone calls, I fill out the paperwork, and I go to the meetings.

I’m not on some kind of ego-trip here.  I do not do these things because I enjoy being the go-to person.  I don’t do these things because bureaucracy is just so much fun.  I do these things because Mark can’t; or, more accurately, I do these things because Mark chooses not to do them, even when it means being penalized or losing or never receiving services we would otherwise be entitled to receive.  I do these things, because as much as these barriers represent a source of unnecessary stress and aggravation for me, they represent near-insurmountable barriers for Mark.

Bureaucracy places a burden on people within this society in many forms and in many ways.  Bureaucracy has a profound effect on daily living, from the medical care we receive to how we pay taxes to managing our reporting requirements.  For me, and for most people, these issues represent an annoyance, an inconvenience, and a consumption of time we’d rather avoid.  This alone is reason enough to affect change.

However, for some, bureaucracy represents a substantial burden that keeps them down.  My husband has lost education opportunities, employment opportunities, entitlements, benefits, and even a marginally profitable business due to the burden of bureaucracy.  Barriers that I would grumblingly crawl over or around are impassable roadblocks to Mark.

While I’m sure someone could analyze Mark and describe this reality in the language of disablism and deficits that is not my purpose.  My point is that we erect arbitrary, unnecessary barriers that exclude people from necessary systems.  In recognition of this phenomenon, government agencies and corporate bodies provide assistants to traverse these barriers.  Often, these assistants present yet another barrier:

1) Their manner is often condescending and disrespectful.  I’ve experienced this myself and have observed this when others deal with my husband.  This behavior makes people feel less able and inferior.  Whether or not this behavior is intentional, it is pervasive.

2) In order to access these assistants, you have to be able to navigate the bureaucracy sufficiently well to communicate the needs for this assistance.

In the face of these additional barriers, Mark opts out.  He chooses not to access necessary services, because he does not want to confront these barriers.

So, while I fret and stress over these barriers, I’m thankful I’m here to face them.  I also grieve for those who are like Mark, but do not have someone who is both willing and able to face these barriers in their stead.  I feel the anger and frustration boil, because these unnecessary, poorly planned “services” are obstacles that reinforce the neurotypical status quo.  And I fear that these barriers will not be torn down by the time my children reach adulthood.