Heal Me.

[This is a warning.  This is a harsh post.  If you are looking for a light post, you should move on.  I do want to thank (or blame – jk) Sam, for making me think and force this entry out of me.]

I read a lot of blogs. Everyone is unique.  Yet, in the little community of autism, we are all tied together by a commonality, like a heartbeat or breathing.  An autonomous thing that keeps us together, despite our infighting.  We don’t talk about it.

I read funny, angry, bitter, beauty, sad, scary, and hopeful.  I read about people who say:

Autism does not define me. I don’t want to be a “Debbie Downer”.  I won’t see the world through rose-colored glasses.  I am a clown.  I am treated like garbage.  I have been abused.  Don’t view me as inferior because I cannot communicate like you.  You don’t understand me.

Most seem to struggle with the dark side. I’m no different.  I’m not a “humor” blog, by any means, but neither do I speak in dark or bleak terms, most of the time.  I, like others, want to people to like me and return.  Basic human nature.

But there is a reason I titled this blog as I did.  When I first started, I did not know stats, or the “autism community”.  I knew my voice and I felt if I could help just one person see something before I saw it in my own child, then I would have done what I set out to. I wanted to provide awareness through my “solodialogue”.   How egotistical, eh?

On the way, I met so many people who walked in my shoes before me, were standing side by side with me, and who wanted to take the steps I took before them, that I was surprised, overwhelmed, grateful, educated, and strengthened.  But, at the same time, I began to wonder where I stood.  And daily, I still struggle with whether what I put on as a post makes me come off as a buffoon, a snob, or some other form of social pariah.

Humanity is strange, you know?  Silly, I know, but I believed for the longest time, that the majority of people had beliefs similar to my own.  As I write that now, I can’t help but laugh.

My first awakenings to the divergence of humanity came years ago when I began to practice law. I had to contact opposing counsel.  He was a Harvard Law graduate.  I prepared and made the call.  The conversation ended.  Within 48 hours, I received a statement that he swore, under penalty of perjury, saying the exact opposite of what I told him and lying on every single point.  Welcome, Karen, to the practice of law.

I was shocked, disgusted, angry and appalled that someone could be so low.  At the same time, my opinion of myself rose, because I realized that I liked that I was honest, trusting and real.  Sure, I lied as a kid growing up, more times than I’d like to remember, on more subjects than I’d like to think.  But, by the time, I reached the point in my life where it was my duty too, to make declarations under penalty of perjury, I knew the value of being honest, understanding what I said had meaning and promoting trust.

My naivete was drained that day, but no worries.  I had plenty left over.  It would be repeatedly drained over years that followed, to this day.  We all want to believe that police, fire fighters, lawyers, judges, teachers, doctors and caregivers are honest and operate from a strict code of ethics that require them to adhere to the highest principles involving privacy, decency, respect, and compassion.  And there are stellar examples of those people in every profession, in every walk of life.

But, where I’m concerned, those are the exceptions.

And even though we don’t want to say it, it is a part of every one of us within this disability community.  It is like a gross, ugly thing that I wish I could rip from its core, burn and remove permanently, but I cannot.  It is not that cute story, iPad app, a repetitive mantra, a head full of thoughts that won’t shut down.

Society values functioning, contributing members.  If you have a job and earn a living you are valuable.  You contribute money that will meet the needs of the rest of the pack.  If you are retired, you have a pension.  Splendid.

If you are disabled, young or elderly, weak, sick, infirm, or potentially of that ilk, the view is not so rosy.  Sad but true, without ability to financially contribute to others, people are expendable to the rest.  Did that sound harsh?  That’s because it is.  And no matter our efforts to educate, to force open the eyes of a majority to the values that this minority can and does provide, they will not hear us.  They will not see, hear, look at, think about or process the value of a disabled or elderly person.  I think that stems from humanity’s basic inertia, laziness, what-have-you.

Instead, they will offer institutionalization for the “hard-to-handle”, and, sadly, the option of starving an elderly person to death, labeling it palliative care rather than providing a gastro-tube and continuing life.  Isolate and remove.  Destroy.

For those of us who love others with disabilities, whether young or elderly, that is a stark reality and fear that we live with, that underlies everything we do and say.  We don’t like to look into those dark places, over the edge into the abyss.  To know that someday, if we are not there to fight, love, help, advocate, listen, oversee, prevent abuse, neglect, to prevent someone from taking advantage, no one may stand in our place.  And so we look to each other to continue to fight, expose, right wrongs.

So, like it or not, when we read each other, and we bicker over acceptance, respect, help, cures, research, spreading the word, or not understanding, we are more united than we know.  We are not the forest.  We are all trees.  See me.

Unite in our desire to elevate those we love and those who we are to a level where we receive respect and the basic humanity that a financially contributing world should give us and those we love.

Can you see me now?

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About solodialogue

I'm a lawyer and the mom of a 6 year old boy with autism. I work part time and spend the rest driving here and there and everywhere for my son's various therapies. Instead of trying cases, I now play Pac-man and watch SpongeBob. I wear old sweaters and jeans and always, always flat shoes to run after my son. Yeah, it's different but I wouldn't change it for anything. The love of my child is the most powerful, beautiful and rewarding aspect of my life.
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19 Responses to Heal Me.

  1. Flannery says:

    I touched on this last week in a post about standardized testing, where I quote someone from Norway about their view of equality. I couldn’t agree more with this, and it comes down to a fundamental shift in our collective conscience. In other countries, they have a philosphy that is to provide for the needs of the many, over the priviledge or achievement of the few.

    In this country, we are all about individual achievement and individual freedoms, and prize that over providing services for the collective good of the people.

    Can we make that shift in thinking? Can we afford not to?

    Nice post, friend.

    • solodialogue says:

      Thanks, Flan. You really said it well with “fundamental shift in our collective conscience.” To be just a bit less selfish and more selfless could change the world.

  2. Lizbeth says:

    I can see you. I’ve see for quite some time. I only wish others could see as clearly. It’s such a big leap to translate what we live and what our needs are up to a higher level. And then to have that received and accepted is a whole other story. But we are trying, little by little. I only wish I could do more and am often at a loss as to how. See, when I started blogging I randomly went out, found blogger and hit publish. Very little thought involved….niaive, I know. I wanted to connect with others who were like me since there are very few other autism moms where I live. And now it’s morphed into something else–a way to educate, relate and hopefully gain some ground. But I’m often left with how to translate what we go through to a higher level. And for that I’m at a loss.

    • utkallie says:

      This covers a good deal of my feelings too. I’m often at a loss. For me, I think it’s because I feel helpless and that no matter what I say or do, I can’t change the deep seeded thoughts of others.

    • solodialogue says:

      You do such a wonderful job, a lot of the time with amazing humor. I see you often as subtly educating… (I know, can you believe it?! ;)) I’m not so sure it’s a higher level we need the translations for. How do we make people care beyond money? Is it possible to value life over a buck? For some of us, yes. But that “some” is far from enough.

  3. Kelly Hafer says:

    Karen – what a brilliant post. You are right, we are all trees.

    This weekend, I have been doing a lot of gardening. We live in what real estate agents call an “established” sub-division. It’s a little over 20 years old. What once was plantation farmland is now broken into 1/3 acre sized lots. The trees on our property, however, go back a hundred years. They are magnificent oaks, pines and maples. Interspersed are new decorative varieties. What struck me this weekend, and where I am going with this comment, is how interwoven the roots of these trees are. The lie under the surface, of course, and unseen to the naked eye. Only when trying to plant new flowers and bushes in the yard did I realize how thick, deep and completely enmeshed my yard is with these roots. I hope the same is true for our community. Yes, we are picking at each other right now, “growing pains” as some have called it, but come Hurricane Season (or DSM release season, I guess), I hope these roots keep all of my trees upright and healthy. If one falls, because of the tangled mess of roots, I am wondering how many it would pull down with it. Something for us all to think about.

    • solodialogue says:

      I love this analogy, Kelly. We are all tied together and when one falls because of the thoughtlessness or carelessness of others, many can be hurt. Very thought provoking and compelling response.

  4. Bravo! Straight from the heart. I’m standing taller because of your truth and honesty. You have a very strong voice, write well, and are highly educated—you have everything in your power to make a difference, and you are! Clapping loudly. I’m so honored to have inspired you and to know you! We might be coming down in June. That would be fun to have a coffee. Again, congrats on an excellent post. I hope writing helped you. Thank you for helping us all stand prouder and in unity. Hugs ~ Sam 🙂

  5. Lisa says:

    This is a hard post…but a necessary one. I see you. I agree with you…we definitely need to make the world…our little ones and the world at large…see the disabled, the frail, the sick, the elderly, the young as people of worth. They ARE worth so much. How we do that, well, that part has me stumped…but I’m thinking, brainstorming…and will continue writing, advocating, and promoting awareness…because I’m not willing to give up. Not on this cause…not on my kid.

    • solodialogue says:

      Thanks, Lisa. Brainstorming, thinking and continuing to do what we do is important, not just for ourselves, but, whether we like it or not, we’re helping each other…

  6. Dawn says:

    i was just thinking about this this morning in the car. It is that fearful nerve that society plucks on a daily basis.

  7. Teresa says:

    Beautiful. When people show you who they are, believe them.

  8. I think so much just boils down to a lack of respect for human life. Our culture is so focused on making tangible contributions that we miss so much of what is most important and often contributed by those individuals deemed not important in society. Sad.

  9. eof737 says:

    This is a touching post and sadly so true… We live in a judgemental world where beauty and money reign supreme and the qualities you mention take a back seat…. Don’t despair as there will always be those who take the high road… and you’ll meet them somehow, somewhere…

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