The Politics of Gratitude

Today is not only MayDay but it is also Blogging Against Disablism Day. Spring has begun, pagan love is in the air, and the blogosphere is ripe with rants and raves.

Today is going to be a great day.

I have spent a good week contemplating what I would write today. I grappled with the specifics of my tirade, but I knew for sure I wanted it to be eloquent, profound and infused with wit. A masterpiece, for sure. Originally I was going to indict the all to familiar power structure of need based help and rant against the illusion of selfless acts. I was going to rally against a system that has shifted all the power in a relationship to the aggressive "giver" by encouraging them to feel self satisfied about their giving (i.e. sacrifices) and discouraged them from expecting a reciprocal relationship. This of course labels the other person as submissive and defines them as helpless; unable to make a valuable contribution. This systematized version of helping robs the receiver of any opportunity to help themselves, thus solidifying a cycle of dependence and inequality.

Yes, that was what I was planning on tackling, but then I read this post by blogging virtuoso Dave Hinsberger. To say the least, I felt it everywhere. It terrified me.

I realized then that I had already written my post. Years ago I found myself tangled in the sticky web of an online debate about the nature of gratitude in the disability community. At face value it may seem completely unrelated to Mr. Hinsberger's frightening tale of the Good Girl, but in my warped little mind it's not. Not at all. I see the Good Girl as an end result to years of being told not to be a burden. Don't stir the pot, want for nothing, and most of all, don't draw attention to yourself. We all should be aware of how easy it is to teach a child with a disability to never say "no".

Call me Lazy McFatten for not writing a post anew and instead publishing an archived argument authored by an idealistic mother only just been initiated into the disability community; say I live in Slackerville if you will, but I choose to believe that bringing in a bit of true cyber experience will only serve to sharpen my point. Plus, I am a big fan of the path of least resistance...especially with my two attention demanding WonderBabes, my husband WonderLove (unfortunately also known as Sir Snores Alot), and our three kitties, who are complete WonderWhirls. Life, it seems, is hard to keep up with...especially when you haven't stretched before the sprint.

But nonetheless, I march on. Today it is to the beat of Blogging Against Disablism's drum. Yay! I get to add another rant label!

It fails to be the masterpiece I once planned, but that pretty much sums up my entire life so thus I march on...


"I'm grateful for all the programs that are provided for my disabled son. He gets more special attention than any of my other children. He gets free early intervention by professionals who come to my house. He gets free physical therapy. He gets tons of medical care. All of which, in some sense, is paid for BY MY NEIGHBORS through their tax dollars. I personally do not take for granted things like wheelchair ramps and specially equipped buses. I don't see any of it as stuff that SHOULD be provided, but as GIFT ... stuff that is provided by the kindness of my neighbors."

(Yeppers. She went there.)

I profoundly disagree with these words. This is the same attitude that other parents use to keep our children out of their classrooms and politicians use to cut programs that our children have a right to. For many who perceive themselves as being gracious it is a short step from expecting gratitude to "we are no longer willing to give at the expense of...". If we allow ourselves to be humbled in such a manner, we will only further isolate our children as we teach them to be thankful for receiving what they do not deserve. We will teach them that they are a burden.

My child is not a burden and she deserves a chance to be all that she wants to be. A person in a wheelchair deserves the ability to travel. A person without eyesight deserves the ability to see all that they can see.

We all deserve opportunities. We all deserve to have possibilities. We all deserve to have potential.

We all deserve the investment.

I am grateful to that my daughter is receiving Early Intervention at the expense of the state and my neighbors, but let us not forget that it is at my expense too. It is at my expense just as it is also at my expense to have my tax dollars support gifted programs and football teams that my daughter will probably never have the chance to participate in. There are countless citizens who pay taxes to support schools yet they have no children...why are they required to fund educations that won't effect them? Because those educations will have an effect them; they have an effect on everyone. The children of our country are our future. Period (and might I add duh!).

If our children are educated, competent and well trained not only will they make better decisions as they grow into the next generation of leaders, but they will also be able to provide more for all of us if we enable them to compete in the global marketplace. The children of America, typical and not so typical, hold all of our futures in their hands. We invest in that future so we can secure the best possible future for everyone.

It is important to remember that it is only recently that our society began to invest in children with disabilities, but I refuse to feel humbled by it. Just because my daughter hasn't been institutionalized at society's beckoning or abandoned by the education system doesn't mean she is lucky; it means she has rights. Shame on all of us that it hasn't always been that way.

I refuse to entertain the idea that Early Intervention, Special Education, Medical Assistance, wheelchair ramps and other accommodations are charities instead of rights. Our citizens have the right to these programs and a right to matter. Our constitution is by the people, for the people. Our children, regardless of their abilities, are the people too.

The parents who allow themselves to feel "humbled" by their neighbors gracious tax dollars are often the same parents who are too grateful to fight for their children's rights when they need to. When they have to. This attitude only reinforces the concept that disability rights aren't rights at all, but rather are a charitable contribution that is gifted by society. That the accommodations which people with disabilities have a right to, that education and health care they are entitled to, are a privilege and not a right at all.

wrong. Wrong. WRONG.

The label "Entitlement" has been added to many programs, but is often said with a sneer and accompanied by the endless cuts such programs have suffered in their funding tells a different story...a story of a privilege and not a right. Surely not the story of entitlement. Sure it would be great if we could keep throwing our dollars into the donation box, but with recent funding shortfalls, we need to focus on what really matters. Sound familiar? I guarantee you have heard it before.

This brings me to a question I have oft wondered as I have watched countless budgets proposals and Senate proposals illustrate our leader's priorities. Why would we ever want to contribute to a society that rationalizes away it's responsibility to it own people? Why are we buying into this crap?

Or rather, why are you buying it?

If I am expected to help fund a war that I don't support to the tune of billions, then my tax dollars better damn well pay for my daughter to learn to talk or for someone else's wheelchair. These services, programs and adaptations afford our citizens some desperately needed opportunities to participate in an inherently unequal society. In fact, many would say they don't do enough to close the gap between those born into opportunity and those not.

But no matter where you sit on that scale, how could anyone disagree that people with disabilities have every right to autonomy and self determination? How can those rights be bestowed but the tools to achieve them be withheld? That's just crazy talk.

Our foremothers were right...it does take a village, even in the most perfect of circumstances. We are lucky enough to live in a country that can afford to create the villages our children need; that our families need. I am grateful for that wealth, but that village...well Emma has a right to belong to it. I expect her to be included just as society expects me to participate so that we both may fulfill our duties as citizens of the state.

It is true that you can judge the health of a society by the quality of life it's citizens are afforded. What does it say about a society that hides their disabled and allows their ill to die needless and horrible deaths...all in the name of the almighty dollar? It says corporate culture. A culture so focused on it's bottom line that may acquire wealth but sacrifices it's own humanity.

I want to live in the United States of America, not the United States, Inc.

Where do you want to live?

It is society's responsibility as well as the individual to promote both inclusion and growth. If we allow society to escape from the responsibility of providing for it's citizens than only the fortunate and lucky will prevail. If we allow citizens to be forgotten, the integrity of the stones we have built our extremely wealthy society on will buckle under the weight of our shortsightedness; if we allow ourselves to become so busy trying to take care of our own that we forget to take care of each other. Let us not delude ourselves into believing they are different.

Taking care of taking care of each other is taking care of our own.

21 ChatterBoxes:

Jen said...

Bravo. BRAVO! I'm standing and saluting you from my little corner of corporate America. Your post was well-thought-out, beautifully written, and most importantly, right.

The Goldfish said...

This was really fantastic. Unfortunately I'm now way past the point of making even vaguely articulate comments, so I don't have much to add, but this is a great contribution to Blogging Against Disablism - thank you.

Penny L. Richards said...

Brava, brava, indeed. Every single kid presents a "pay now/pay later" scenario--you invest in kids early, give them every chance to learn and grow, because the alternative is what? Letting them fall, hard, and then trying to reverse the effects of neglect? When has that ever worked? When would that be cheaper?

And this is true for EVERY KID. Period. Maybe the specifics of the early investment are different from kid to kid, but it's always a bargain.

epi said...

Great great post - thank you for saying it all so eloquently!

Ruth said...

How interesting that those who are in the "entitled class" (as I was just noting over at The Gimp Parade) don't discuss or want to recognize their entitlement vis a vis how they deal with people with disabilities but use the word entitlement against us. Just my two cents.

Michelle said...

I don't think there was anything in the rules that said you couldn't use an archived post! LOL Especially one that is so well-written, but then again, coming from you I wouldn't have expected anything less!

I completely agree that those things are rights and certainly not charitable handouts! I never would have thought someone could have looked at it that way.

Great post! Mine is up as well.

Dave Hingsburger said...

I join Jen and the others with my cheers. This was a post that I read faster and faster, as if you were speaking directly to me with passion and power. I was breathless when it was over. Beautiful. Dave Hingsburger

Shannon said...

You go girl! It feels good to have a good rant now and then, doesn't it?

You really nailed it!

Never That Easy said...

Wow wow wow wow wow. An amazing and incredibly articulate post... so, so on point. Amazing.

Rebecca said...

Oh Emily, I'm so tired, and I would love to read this post, but my eyes can't focus, too much black and white high contrast. Have you ever thought about using another color, maybe a dark gray in the center column?

Just a suggestion for my weary eyes.

Rebecca said...

By the way, the current layout is fabulous, don't worry about me, I'm just talking tired.

Hugs to you and your lovely two from Elainah and I.

Nicole said...

You know when things are just RIGHT it's so hard to even think about someone arguing with you! I'm bookmarking this for future use. You said it well and RIGHT!

Sara said...

"We all deserve opportunities. We all deserve to have possibilities. We all deserve to have potential.

"We all deserve the investment."

Hell, yes. Nice one.

Blue / Kay Olson said...

Hell, if all your recycled posts are going to hit the mark like this one, stop writing anything new! ;)

Nancy said...

Such a powerful post! Bravo, Emily! I wish I could write as eloquently as you do.

My post about "blogging against disablism" will be a little late because I have had so many things come up in the last few days... mostly regarding my child who is disabled, chronically ill, terminally ill, developmentally delayed, oxygen dependent, homebound, wheelchair dependent, ... choose your "label", they all fit... but in my eyes she is the most precious, loving, inspirational, strong, determined, caring, compassionate and innocent person who is worth every ounce of energy I have.

Tomorrow I put back on my sword of truth and shield of love and go forth to fight for her RIGHTS! Again. I've had to fight for her rights so many times over the years I can't even count them all... but each and every one has been worth it.

Nancy said...

I got it done! YAY! I posted about a positive experience! I hope you read it and enjoy it. :-)

Nancy said...

I almost forgot to say... go to my "Are We Having Fun Yet?" Blog to read it.

Attila The Mom said...

Brilliant, brilliant post. I'm so glad you reposted it, so those of us who missed it the first time around could have the pleasure of reading it.

Thanks so much!

Karen said...

Beautifully said!

MrSoul said...

Great post! I have been reading your blog, about your darling little girl. I wanted to let you know about another tri-21 actor, to add to your comprehensive list, Max Lewis:
http://www.imdb.com/name/nm2428265/
He is in NOTES ON A SCANDAL, which I just saw on DVD--great movie!
It's nice to have a disabled character as just another kid in a family, and not the focus of trouble and problems. Let us know what you think!

Anonymous said...

Great! Well said.

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