Disability Diagnosis

Everyone with a disability has been diagnosed at some time of their life.  Maybe before birth through genetic testing, or at birth, or as a baby, child, adult.  Those moments, the diagnoses, change everything, and everyone, in that person's world.  Parents, family, friends.  A diagnosis changes the world. A few years ago, for a writing class, I shared my experiences.  Not surprisingly, the story started with diagnosis. I wrote:

I know quiet monsters.  I meet them in small white-light rooms with faded forest prints beside posters of spinal columns.  I am introduced with remarkable calm. . . . The doctors walk away and I am left holding the hand of these quiet monsters.  I am the one who knows them.  I will become their world.  As they become mine.

I was first diagnosed at twelve years old, and I think my parents told me about that diagnosis.  I wanted nothing to do with it.  More recently, I stood in front of xrays of my 'classic' Charcot Marie Tooth foot and heard, no it's not tendinitis.  This gray shading looks like arthritis.

I didn't even know what that meant.  My podiatrist was very kind, offered what he could, made a follow-up appointment for custom orthotics, and moved on to his next appointment.  I went home straight to the internet.  Which was a dangerous because I soon found the words painful and incurable.

It's very difficult because we don't have support for adjusting to a life-changing diagnosis.  We know we go through a grieving.  We feel shock, disbelief, anger, sadness, than hopefully acceptance.  We muddle through all of that as best we can.  The particular challenge with a disability diagnosis is that it does not go away.

In one sense, it might be a single grieving- loss of a limb, loss of eyesight, etc.  In those instances, there may be an initial adjustment followed by a long plateau of acceptance.

Many of our disabling conditions, unfortunately, are chronic and unpredictable.  They may be genetic or mysterious and they may change from day to day, and/or worsen over time.  In these cases, the grieving never ends.  Which becomes absolutely exhausting.

Before I talk about the ongoing emotional challenges of a chronic condition, I want to throw out two reactions that I did not see on my internet searches.  I also want to clarify that there is no right or wrong way to react.  Our life-paths are very unique journeys and no one can claim the 'right' way to travel.

That said, there are some common feelings and reactions.  One that is entirely unexpected to most people is relief.  Yes, relief at a diagnosis that indicates disability.  Why?

The disability exists regardless of a diagnosis.  And we may struggle for years to compensate for, or adapt to, or fix our challenges.  Having a name, and a story, finally gives some power back.  Now, we can understand. We can meet the challenges with realistic expectations.  We can let go.

This is especially critical with children.  I am not an advocate of labeling children in the sense of building small walls around them and saying,you cannot go here.  However, I am a huge advocate of diagnosing children.  I have worked with young children for the past twelve years.  I have seen a number of kids walk into kindergarten, first, or second grade with a heap of problems.  They may be called lazy, or unfocused, or defiant. I watch them closely.  I call it my curious-time, when I watch for patterns, and especially mood and effort.  If I see a child is trying, genuinely trying, and continues to struggle, I become curious.

We take on a lot of responsibility for our abilities.  And when something remains out of reach, even when we try, it becomes frustrating, then infuriating, and finally not worth the effort.

I couldn't tell you how many people taught me how to catch a ball.  They showed me every step.  They placed my hands in the air.  They guided me through the process with great patience.  They told me to watch the ball and pay attention.

And I couldn't catch the ball.  I knew I couldn't catch the ball.  Kids know when something is difficult.  They see their friends enjoy activities that seem annoying to them.  They know they are different.

When you get a story, a reason why you are different, that is a huge empowering moment.  The first time I walked up to a PE teacher (PE was my most stressful and unpleasant hour of the day) and said that running the mile in an allotted time was hard for me, and she said, you know what?  Do what you can, walk the track if you want. An enormous weight lifted from me.  I participated, sure, but I no longer measured myself against an unattainable standard.

Diagnosis can be a great gift.  Especially to kids.

But it can be devastating for families.  Working with extraordinary children can be a full time job and I applaud every family raising an extraordinary child.

As I write, I realize that diagnosis is a massive topic.  I won't sum it all up today.  So I'll concentrate on initial reactions.  Next week I'll talk about coping long-term.  I think.

Because another not-often mentioned emotion is fear.  We worry about managing the symptoms short term and long term.  We worry about future degeneration.  We worry about financial support.  We worry what our challenges mean to our loved ones.  And I think that is part of the culture of silence, the quiet around disability culture, because we don't want anyone to worry about us.  It's easier to carry the burden of fear alone than see concern in another person's eyes.

We don't give a lot of credit to the emotional journey of disability, but as I write I see it is a massive journey.  We are heroes :).  It's easy to understand how people turn to substance abuse or depression when faced with these emotional tsumanis.

It's important to have a coping plan. I'll mull on that this week.  What substantive tools can we use to support ourselves during the dark times?  Some days, a scented candle or a good movie can turn my around emotionally.  Other days the emotions are just too huge and cannot be touched by token gestures.  So that's a think-about topic.  How can we build a cuture of support for the very real emotions of disability?

I know I take extra care with travel, or family gatherings, or changes in routine, because we reach a place where we 'normalize' in our world.  OUr home, our immediate surroundings, hopefully become safezones.  And it's when you get out that you nitice all over again the difference.  And that could lead to isolation, if taking risks triggers feelings of inadequacy and frustration.

That's why our tools, our technology, our communication is so important.

The very reminders of challenges can trigger a lot of emotions, which is why travel, family visits, anything unexpected can become stressful and unpleasant because it can be a reminder of challenges.  Change can be daunting.

If we can redefine disability, we can redefine the struggle to overcome disability.  We could change the overachieving, obstacle-driven journey that often colors disability stories in today's world.  If we could own our story, and the diagnosis, without feelings of shame or guilt, then we could have adventures on our terms.  Perhaps diagnosis would not be so devastating.

I felt, along this journey, that there would be intolerable times, that when I lost this ability, or reached this certain stage, I would not be able to handle that.  It would be so awful.  Then I get there.  And I continue on because what else is there to do?

And it isn't so awful.  There is so much more living to be done.  And I am stronger than I ever thought possible.

Every diagnosis is a radical shift in our lifepath.  Not easy.  And not impossible, either.  And sometimes, it may lead to opportunities . . .  undiscovered countries.  For me, I've spent a lot more time with my children after my disability required that I quit my full time job.  I cannot call my disability good or bad.  It is what it is.  And I do the best I can on this path.

Which is a our universal journey.  Traveling the best we can.

In that spirit, we're going to take a break from the technology reviews this week to talk about amusement parks.  I love travel.  I love adventures.  But I'm finding planning is key to successful adventures.  I've had great experiences at amusement parks and some pretty low moments at amusement parks.  I'll give more in depth reports as I travel this year, but it's been a couple years since I visited the big ones in Southern California.  Today, I want to share my best amusement park for accessibility.  It may surprise you.

I learned fairly quickly in my adventures that there is another layer to amusement parks.  They all have plans for accessibility- some are simply more prepared than others.  Most websites have an accesibility, or disability section with generalized information.  The first stop when you get in the gates should be Guest Services.  You do not need to show proof of your disability, that is against the law (at least in California- not sure about nationwide).  I usually describe my challenges and ask how they can help.  People have been very kind almost everywhere I have visited.  There are often shuttles, or ways to avoid standing in long lines.  It's definitely worth asking.  We recently got to see the baby panda in the San Diego Zoo because I asked about accessibility.  Without asking, that line would have been an impossibility.

My best experience was somewhere I didn't feel awkward for disrupting the flow of the ride, where I knew what to expect, where I ended the day feeling included, having fun, and not even too exhausted to walk back to the car :)

Now, your first question may be why I don't rent a wheelchair.  I have in the past, and I'm sure that I will again in the future.  But the wheelchair is hard when you have a young child in a stroller- who pushes then?  And wheelchairs are often an added cost.  We usually travel on a tight budget.  So we make do the best we can.  And I can walk fine.  It just hurts to stand for long periods of time.

So, back to my favorite.  The park?  Drum roll . . . Universal Studios Hollywood.  Which surprised me.  I didn't expect a lot.  The thing that worked so well for them was that they had a VIP pass that anyone could purchase.  This pass gave above-and-beyond perks that I didn't get with my access-pass, which is fine.  But it meant they had made plans at every attraction for VIP ticket-holders.  There were areas set aside with benches where people could wait and avoid the switchbacks.

Another thing,  I do not expect to get on the ride faster- I am fine waiting.  It's just the standing that gets to me.  If I can sit and wait somewhere, I am golden- although it's not so fun to sit all by yourself while everyone else hangs out in line.  I've had that offered to me before.  Then I feel really isolated and left out . . . no thanks.

Anyway, Universal Studios had areas for sitting by each attraction.  They let you in early so there wasn't the jostling crowds which upset my sense of balance.  And since there was this pass, there was no stigma in being separated from the main lines.

Everyone working there was well trained and could answer our questions with consistent information.  The plans were simple.  I didn't have too look up different procedures for different rides (at some parks, sometimes you go to the exits, sometimes you talk to the attendant at the line beginning, sometimes they're not sure where you go . . .)

I went to Universal Studios at a pretty dark time when I thought things like amusement parks were in my past, that I wouldn't be able to keep up with the demands of an adventure.  And I left feeling capable, having fun memories, and ready to return again.  So thanks!

Maybe we'll swing by this summer!

I'll include more travel info as I get out and about.

For now- our app of the week!  This is Speaking Pad, which says aloud whatever you type into the phone- it's free and may be a fun way to communication with anyone with speech challenges, or even with kiddos who may be shy about speaking in public places.  The standard voice was very robotic, which may be fun in itself.  There was a .99 upgrade for a better voice that we did not try.  The app itself is free on the Android Marketplace.

We're still working on that iTouch so we can share Apple apps with you!  Our budget is tight.  Any ideas?

Thanks for joining the community this week.  Enjoy your day!

Links:

Universal Studios Hollywood Speaking Pad: I couldn't find a dedicated site- this links to the Android Market