Go Big… or Go Home

This post would be the “go big” part of that statement… no-holds-barred, taking the issues head-on.  It’s posted in full on my Facebook page, too.

Over, and over, and over, I hear parents say that I don’t know what “real” autism is like (oh, I guess my 20-some years of outright suffering was just because I felt like it) and that I’m standing in the way of their kids getting what they need. They say that their kids have behavioral issues and can’t communicate, and I say, “I believe he can communicate, and I’m happy to help you in whatever way I can to make that happen.” No one has EVER taken me up on that… but many do go on to continue to throw attacks at me. The very last thing I want is for any child or family to suffer. Not only that, but I’ll do whatever I can to turn things around. People don’t just refuse the help, they continue to be accusatory… and you know, I’m starting to think that people want to suffer, that it’s become a martyrdom. I don’t want to believe that, and yet I don’t know what else to believe.

“Cure” has become such a dividing word. I realize that, when parents say they want a cure, they almost always mean something different than advocates like me hear in the same word. Parents mean that they want to minimize their children’s suffering. They don’t want a different child, but they don’t want the child to be in pain, without a way to communicate, and self-harming.

I don’t know any advocate who DOES want children to be in those situations. The problem is that the one and only way we are anywhere, remotely, even on track to think about finding a cause, let alone a cure, is by way of genetic testing and a prenatal test. Essentially, the idea is that an unborn baby could be tested for his genetic risk toward developing autism, and parents would have the choice to abort. We have this ability with Down Syndrome, and the reality is that over 90% of fetuses known to have DS are aborted. Why are we kidding ourselves into thinking we’d see anything different with autism? I very well may have never had the chance at life. I very well may not know some of my amazing friends, some of whom can speak and others of whom cannot.

The thing is that, had such a test been available in 1987, my parents might have learned that I would grow up to need a feeding tube, IV support, have an ostomy, and an insulin pump. They might hear that I would be in constant, intense pain, that I would spend a lot of time in the hospital, and that I would need multiple surgeries and deal with severe fatigue, autonomic issues, fragile skin, joint pain, and be almost unable to eat. But, no prenatal test has the ability to tell my parents that I would love kitties to the extreme, write books, speak at national conference, earn my Master’s, or find a way, despite it all, to live independently. They would not know that I would have a deep, abiding faith and uncrushable joy. The tests can tell you all the bad, but they cannot and will never tell you anything about the good–the person.

I don’t for a second stand in the way of easing suffering, but my faith and my belief that my life is worthwhile, even with all the crap my body throws at me, mean that I will not stand in support of a test like that. Please don’t throw accusations of “not knowing what real autism is like” or being a “quirky genius” at me, as if I don’t know pain, rejection, and isolation. I don’t want anybody to suffer, and it breaks my heart when I see kids in crisis. I’ll do whatever I can to make good on my promise to help anyone who asks. Know that when you support a cure, in its current realistic possibility, and the organizations who are working toward it, by default, you’re supporting a prenatal test. I hope that, in the future, we have a way to ease suffering without undoing life. Until then, I’m glad we don’t, because no pain makes the joy not worth it.

 

Tests could tell you that all of this would be a part of my life...

Tests could tell you that all of this would be a part of my life…

... but not about the joy of having the cutest nephew in the world!

… but not about the joy of having the cutest nephew in the world!

...and not about writing my own books!

…and not about writing my own books!

... and not about friendship like this, or the Disney trips it would involve!

… and not about friendship like this, or the Disney trips it would involve!

... and not about autistic community like this!

… and not about autistic community like this!

... and not about faith like this.

… and not about faith like this.

I’m Not Your Inspiration

Early in my public appearances in relation to autism and my work in the field, I heard one message repeatedly: You’re so inspiring!

Inside, I cringed.  When you meet someone with a disability and tell them that you’re inspired by their very existence, it sends some pretty gut-wrenching messages.  You’re telling that person that when you imagine being in their shoes, you probably wouldn’t find it worth getting out of bed in the morning.  You’re saying, “You really have it so bad that you’re a brave soul just for getting dressed and leaving the house.”  You’re insinuating that the person is somehow remarkable for doing very everyday things.

Listen, when I write or get up and speak, I’m just doing what I do.  Your work might be in an office or a school.  Mine is behind my computer and interacting with people.  I’m doing what I do best in a way that I hope will benefit others with the mind I’ve always had and the only body I’ve ever known… just like you do.  How would you feel if someone said that they’re inspired that you have the gumption to live a public being as short as you are, or that they’re inspired by your willpower to walk from here to there?  You’re just doing what you do with what you’ve got.

When you post a meme of a person with Down Syndrome accompanied by the text “the only disability is a bad attitude,” you undo all the work I do every day.  Disability doesn’t mean that anything is wrong with anybody.  It means that a person has a mind or body that works differently than the majority of minds and bodies in his society.  So, in this world, autism is a disability mostly by way of the fact that approximately 98% of people are not autistic.  But, if the “only disability is a bad attitude,” then why should a boss provide accommodations for a blind employee?  Just think more positively, Pete, and you’ll be able to do your work!  Why should a school have IEP plans?  A hip-hip-hooray or two is all that’s needed for any student to succeed!  And, to paraphrase the awesome disability advocate Stella Young, when a wheelchair user approaches a staircase, a big smile is totally going to turn it into a ramp.  Right?  

No.  Disability is a cultural construct, but that doesn’t make it less real.  Accommodations are absolutelytotallyandcompletely necessary.

How about the meme with a person with prostheses running and the statement that “your excuse is invalid.”  It reminds me of 10th grade gym class, when the day came, as it came every year, that we had to run a timed mile.  I had gym first period in the morning.  I’ve had type I diabetes since age 3 (and now approximately a zillion other illnesses), and that morning, my insulin pump site had a kink in it.  My blood sugar was 590-something, which is critically high.  A normal blood sugar is 70-100, though type I diabetics are well-acquainted with numbers far outside that range.  Above 350, I run IV fluids from home, and above 1000 is “incompatible with life.”  I was 970ish when I was diagnosed.

So, anyway, my gym teacher told me that if I didn’t run my mile that day, that I would get an automatic fail.  I ran it during my lunch period… which meant no lunch.  And I hadn’t had breakfast because of the super-high blood sugar, and I was still very high.  But I was ranked first in my class of 550 students… I wasn’t going to lose my rank because of a damn one-mile run.  So I ran it.

And, halfway through, I collapsed on the track.  The gym teacher didn’t even stop the clock and didn’t come over to check on me.  I finished. the. freaking. test.

Though the horrible quip about my excuse being invalid wasn’t on my mind at the time, isn’t that exactly the kind of behavior it’s supporting?  It’s saying to ignore any and all signs that maybe you should stop doing something, that maybe it’s time to take another direction, that it’s okay to say that something isn’t safe or otherwise okay in a given moment.

It’s also saying that disability is never an okay reason to say that I can’t do something.  It’s saying that accommodations are not necessary, that people should just try harder and do the thing.  If a person with a mobility disability cannot walk, it’s blaming him for it.  If an autistic person cannot speak, it becomes his fault for not working hard enough.  

Finally, it’s sending the able-bodied person the message that, dude, at last you’re not this effed-up.  If this seriously broken person can do the thing, then certainly you can do the thing.  It’s making you feel better about yourself and your circumstances by feeling pity for someone else… not okay.

I still interface with the public with respect to autism advocacy, but I’ve learned that there are things I can do and say that encourage people to be inspired by things other than my disability status.  I don’t ever want people to hear about my health battles or autism and think to themselves, my goodness, if that girl who is that broken can write and speak and get her Master’s and so forth, and I’m not nearly that messed up, then surely I can do it. 

What I do want is for people to meet me and think to themselves, holy mackerel, that girl is on fire!  She’s enthusiastic, kind to others, and passionate.  I want them to admire my faith, peace, hope, and joy and get the message that those things are theirs for the taking, too… and not pity my circumstances to feel better about themselves.  To encourage the reception of the right message and not the wrong one, I balance the time I spend talking about disability and the time I spend talking about other things, like faith and mentoring and passion.  I broaden my message to reach people on a basic level of humanity instead as often as I can, and I try to make the connection that autistic people are first people without any qualifiers.  Yes, autism is part of my identity, but my humanity comes even before that.  I have to both explain that autism makes my experience very different… and share the ways that it really doesn’t make me so different, after all.  It’s a balance, and not an easy one.  Following a presentation, I connect with people not just about autism but about almost anything… sometimes, I pull autism back into it, since that’s the reason most people meet me, but it’s not the absolute focus of every conversational exchange.

People still tell me they’re inspired, but it’s a very different message.  They follow the comment with things like “….you’re so passionate about what you do,” or “…your faith is incredible” or “…it’s awesome that you’ve followed your dreams.”  The last one, I still qualify… I don’t follow my dreams at all.  If I did, believe me, that I wouldn’t be here and I wouldn’t even be alive.  I follow God’s call on my life, which is utterly different than following my own dreams.  

But, that’s a qualification I’m happy to make.  I’m happy that the adjustments in the way I present and how I engage with people sends the message that the inspiration really has little to do with my disability… and everything to do with what I know to be God’s redeeming work in me.  I often say that if you’re inspired by anything I say or have done, then your inspiration is not me at all but God.  He’s the one who pulled me out of the muck and mire, out of the darkness, and into His marvelous light… and this amazing journey.

The View from the Mountain

I know that my recent post on Freshly Pressed (which, by the way, was downright awesome and I thank WordPress!) has drawn a lot of new readers who may not know my story.  Lesson one in Lydia writing is that everything has a back story.

The background is that I’ve been in a nursing home for fifteen months.  I have complex medical issues due to what we can best guess is mitochondrial disease.  Essentially, my mitochondria (which turn food to energy) suck at their job, so my body suffers from extreme lack of energy.  Some of the results of that are a clear connection, such as the fact that I can sleep for 15 hours and still be exhausted.  Others may take a moment of thinking… like, for example, my organ systems suffer the same lack of energy, so those that use the most (GI, endocrine, eyes, autonomic nervous system) don’t work very well.  I have a feeding tube, an ileostomy (like a colostomy except I don’t have a colon so it’s my ileum, or small intestine, connected to my abdominal wall), an insulin pump due to almost life-long type I diabetes, and an IV port.  My kitchen has almost no food, but every cabinet and drawer plus eight more drawers standing in the corner contain medical supplies.  Autism + having to manage THAT?  That’s why I was in a facility–I wasn’t able to do it.  We’re confident that I can at this point, so, I moved into my own studio on Monday… 

Now, I spent the last year or so writing a (non-autism-related) book about my testimony and my journey, and while I won’t go into detail here (yes, even I know, sometimes, when to skip certain details for the sake of brevity!), I will say that one of my big struggles as I concluded that book was unifying my story.  In my mind, I had an autism story, and I had a medical story, and I had a recovery-from-mental-illness story, and I had a faith story… but, I didn’t know how to unify those.  Who am I–Lydia–not from an angle, but straight on, as a single story?  As a Christian, my belief and my answer to that question is that the way Christ sees me… that is the one, true version of myself… that is THE story.  Autism and writing and recovery… those are all things that God either created me to be or allowed in my life and used them for good… but they cannot be THE story.  So, you come for an autism blog… but autism is not the end-all of who I am, and my life has plots in which autism does not play a part, so sometimes, you will get tastes of other things.  I come here, at times, to process, and sometimes, the processing involves other aspects of life, because I cannot just leave them out.

The last fifteen months have taught me lessons I never expected but yet desperately needed to learn.  One of the most life-changing things I know, and when I say know, I mean that I know it in the sense that I’ve lived it and not that I believe it’s true… I know (that I know that I KNOW!) that things like joy, and hope, and peace, and purpose, and freedom are not circumstantial.  At least, they cannot be if we want them to be abiding.  In order to bring those things wherever you go, into the valleys of life, they have to come from inside of you and not outside circumstance.  If you depend on external situations to be your joy, or your hope or your freedom, then you will lose them over and over again.  But if they, if He, is in you, then you will carry the one and only Source wherever you go.

When I’m on one of life’s mountaintops as I am right now, it’s easy to feel like I’ve reached a pinnacle. In some senses, some parts of my journey, have reached a beautiful closing.  I mean, I cannot contain the sheer joy at being in my own space into little black words on a white background.  Music is the best way to capture my emotion, and I play it constantly and sing and worship with every new song that pops on (which I couldn’t do in the facility much of the time because of my elderly roommate).  But, even from this miraculous view from the mountain, in which I look around at where I’ve been and feel the exhilaration of the closing of those chapters and the possibility at what lies ahead, assured that God has control over every new thing…  I have to remember that becoming like Christ is a lifelong process, and that, if I let Him, God can take me ever deeper in knowing Him. It’s a scary thing to pray to go deeper when you’re up so high, because going deeper involves things like discomfort and struggle. Still, So, even from the mountaintop, my prayer comes from one of my favorite worship songs…

Spirit lead me where my trust is without borders
Let me walk upon the waters
Wherever You would call me
Take me deeper than my feet could ever wander
And my faith will be made stronger
In the presence of my Savior

(Hillsong United, “Oceans”)

 

Short and sweet and life-changing

I found myself doing my laundry in the kitchen sink (just necessities, because I was so exhausted from moving this week that I just couldn’t deal with machines and the wait time for washing and drying)… and in order to make it tolerable, I thought to myself, well, it’s certainly a fun sensory experience at the least! That’s how I deal with life. When something sucks, I find whatever sliver of fun or good in it and run with it… I hate taking my trash to the dumpster, so when I do, I make sure to get a huge swing and throw it way up, over my head (I hope it never explodes or anything while it’s up there!). I always hated scooping the little box, so I decided that I was digging for treasure as a kid. I even take it so far as to choose to focus on the aspect of changing my ostomy bag as a craft project… there’s cutting and putty involved, to give you context, so it’s not a totally random connection. No matter how much you dread a task, if you find SOMETHING in it that appeals to your nature and things you enjoy… well, you might find yourself doing a jig when you have to scoop the dog poop! Okay, maybe not, but a little chosen perspective can have a big effect on those dreaded little daily tasks.

If you’re laughing at me (and I wouldn’t hold it against you if you are!)… just remember that I’m digging for treasure, doing crafts, and playing in suds… while you’re still focused on bending, sweating, and stinking. I’ll keep my way…