Mad Props

The top definition in the Urban Dictionary for "mad props" goes like this:

"mad" = extreme; "props" = support (in a congratulatory sense)
Mad props to the creator of this site!

In Wisconsin, mad props are due to a dedicated contingent of disability advocates who've been working on various legislative initiatives that were decided this month in the Capitol. It seems almost strange to have so much to celebrate on the disability-advocacy front in Wisconsin, in a year when so many things have careened in such a miserable direction. But it's true -- and it was bi-partisan, too!

I wrote in greater detail on four big legislative wins in a piece on Daily Kos earlier this week, but here's the short version:

Big Win #1: We managed to halt a cash-grab of a bill, a terribly-flawed school voucher program written by the American Legislative Exchange Council (ALEC) and called the Special Needs Scholarship Program Act. I wrote about it on Elvis Sightings back in May and July last year.

Big Win #2: The legislature lifted the caps on enrollment in Wisconsin's long-term care programs, fixing a serious problem that had been created by Gov. Walker's 2011/2013 budget. I've been active on this one too; wrote a personal take here called Freezing the Future last spring when the caps were imposed.

Big Win #3: The legislature passed a bill limiting and regulating the use of seclusion and restraint in public schools, an issue that falls disproportionately on students with disabilities. The vote was unanimous in both chambers!

Big Win #4: The legislature passed the People First bill, updating terminology in Wisconsin statute such that the outdated & pejorative "mental retardation" will be replaced with "intellectual disability." Another unanimous bipartisan win -- down with the "R-word"!

My Wisconsin Partners in Policymaking class had our fingerprints all over these. Many of us had been involved in one or more of these initiatives for years! Now that we were organized as a class, we went into high gear during the last month of the legislative session: testifying, organizing, and writing and calling and lobbying our legislators in person.

When we met last Friday just after a week of all these wins becoming official, we were ready to celebrate! Mad props to every last person in the group! To our great delight, we received an invitation as a group to attend the bill-signing event in Milwaukee in which Governor Walker was to sign Big Wins #2-4 into law! About half of our class were able to attend. (I didn't make it, but was there in spirit -- while hand-delivering thank-you letters at the Capitol to legislators on both sides of the aisle.)

Our training last weekend focused on the ins and outs of the legislative process that we'd just experienced so powerfully, with lessons and role-plays on communicating with law-makers, and how to craft a winning message on our issues. One dominant theme was the importance of a nonpartisan approach. We heard again and again that our issues transcend party lines; that there are disability champions on the right as well as on the left; that we need both parties on our side no matter who's in power.

That's a challenging lesson to internalize at this point in Wisconsin history. I've proudly staked out a personal partisan stance in full-throated opposition to what's been wreaked on Wisconsin from the right this past year. And yet, my Partners in Policymaking family (it's really starting to feel that way) has a range of partisan leanings. I was one of three Partners who sat for hours waiting to testify against the voucher-bill before the Senate Education Committee, sitting in solidarity on this issue right next to a colleague whose political leanings are quite different than mine.

I was tempted at that hearing to rail against the corporatist, cash-grab ALEC roots of the voucher bill, something that Rep. Mark Pocan (D) did very effectively later in the Assembly when the bill came to the floor. However, I resisted the urge and kept my remarks focused on Joy and on the substance of the legislation. Having done so, I was then able to take a thank-you letter to the office of the Republican chair of the Senate Education Committee, and have a cordial and productive conversation with the clerk who had staffed the hearing for him.

I don't know who in our Partners group has signed the recall petition, but I know that it didn't really matter when it came time for people to decide whether or not to attend the bill-signing ceremony. The importance of the legislative victories FAR outweighed any political point-scoring maneuvers. We were enjoined to keep the date & time of the signing a secret such that political protest would not overshadow the content of our victories, and we all did so. After all, it takes a governor to sign a bill into law, and we've got the governor that we've got, not the governor that some of us might wish to have!

Being present at the signing was a powerful experience for my Partners colleagues, as evidenced in post-signing blogging -- there were a ton of photos and stories on Facebook as well. It was jarring and dis-heartening after the ceremony, then, to learn that a spokesman for the Democratic Party of Wisconsin had made the following statement to a news reporter about Governor Walker and the event:

"It’s pretty shocking that he’s using a community that he’s almost ground underfoot in this budget as props, as he’s seeking recall here."

Props. The spokesman for the Democratic Party of Wisconsin thinks that all those incredibly hard-working, politically-savvy, overwhelmingly-committed disability advocates at the bill-signing were nothing more than mindless props for Governor Walker.

We're not props. And being called props makes us... well, MAD.

Both I and another Partners colleague wrote letters to the Democratic Party of Wisconsin, pointing out the error of the spokesman's ways.

We need to work with both parties, celebrate what both parties do right, and hold them accountable for what they don't.

And with that, I promise that the next post will be much more Joy-centric! Because that's what all this policy stuff is about. It's about people, and making better lives for all of us.

Not So Lucky As All That

Last November I wrote a post with the title Lucky, wherein Rose and I discussed how much things had changed from when I was in elementary school and kids with disabilities didn't get educated in the same schools as their typically-developing peers, if they got to go to school at all.

Her priceless summation of the situation:

It's so lucky for Joy's class that they get to know her and have her in school with them!

Those words are haunting me just now, as we're thinking ahead to next year with IEP-ing and with filling out questionnaires that will inform how next year's classes get assembled.

You see, although students with disabilities at Rose & Joy's elementary school are educated in classrooms with typically-developing classmates, it's not spread out evenly across the school. The school practices "clustering," whereby the kids with IEPs all get assigned into just one or two classrooms per grade, so that the special-ed staff can focus there and collaborate with just one or two regular-ed teachers. (A similar thing happens with students for whom English is a second language).

What ends up happening is that the ratio of disability to non-disability in the cluster-classes gets pretty far out of whack in comparison to the real world. Any behavior issues associated with the disabilites end up concentrated too -- and multiplying upon one another. And it can leave some folks thinking that students with and without disabilities really shouldn't mix, because look at all the problems that arise!!

It also means that Rose is not so lucky as all that.

Like her mother 40 years before... Rose has never been in a homeroom class with a student who has a significant developmental disability.

Just now, that feels incredibly unlucky to me.

Learning About Social Capital (While Being Social Near the Capitol)

Time is flying again. Today's the day I get another chance to be social with my new Partners in Policymaking friends in the capital city (in the shadow of the Capitol), where last month we learned about a simply capital concept -- applying the idea of social capital to our thinking about disabilities.

But first, I still haven't gone into detail about what Wisconsin Partners in Policymaking is. This is Wisconsin's first go at a program that's been around in other states for over 20 years: a leadership training for self-advocates and family members regarding public policy in developmental disabilities. There's a select group of thirty of us from across the state, with 10 self-advocates and 20 family members (mostly parents but a few sibs as well), meeting one weekend per month across six months. We're sponsored by the Wisconsin Board for People with Developmental Disabilities and several other organizations besides.

It's a power-packed group of folks, many of whom have already held various leadership positions and done great advocacy work on their own behalf and on behalf of their loved ones. The point now is to take it to the next level, and start to build a statewide grassroots advocacy network.

As with the LEND program I did two years ago, there's way too much to be able to share it all. I'm going to have to pick and choose what to pass along. From the January meeting, I've already referred to a couple of the readings in my last post.

So I'll just highlight the "social capital" presentation, because I think it's important.

Social capital has to do with the give-and-take, the mutual relationships between people that make society what it is. As a research concept, there are a couple of competing definitions. The World Bank definition, not surprisingly, refers to economic prosperity. Robert Putnam, of Bowling Alone fame, defined social capital as "features of social organization such as networks, norms, and social trust that facilitate coordination and cooperation for mutual benefit."

The point of the Partners presentation -- people with disabilities also have social capital, need social capital, can build social capital. Mutual relationships. People with disabilities aren't just the recipients; social capital is a back-and-forth thing.

I like this a whole lot better as a concept than the natural supports construct I wrote about from LEND a couple of years ago.

Not that "natural supports" isn't on to something important: it points out that all-too-often we focus way too much on the paid personnel who support and accompany people with disabilities, to the exclusion of the more natural web of support that a community provides. Extended family, classmates, neighbors, fellow church-members, there's a whole world of people out there who can provide support in a more natural, normal, it-takes-a-village-to-live-a-good-life kind of way.

The one thing that the concept of natural supports lacks (well, besides an immediately-understandable name) is the element of mutuality. The nomenclature tends to focus the attention on the caregivers/supporters rather than acknowledging that people with disabilities are participants in the relationships, just like people without disabilities.

So, social capital. Give-and-take relationships, a network to cultivate, a concept that applies to everybody, not just people with disabilities.

It strikes me that social capital also applies to some extent in paid relationships. I was on to that back in 2008, when I blogged about how I wanted our house to be a favorite place for the in-home therapists to come! Little gifts of produce from the garden, being organized and courteous and available, making sure the house wasn't too disgustingly grungy. Building social capital -- and we end up with employees who interact with us on a friendship level as well as professional, and remain in contact after the professional relationship ends.

For Joy, she doesn't know she's doing it, but she's been building social capital with smiles, with bye-bye waves, with hugs and requests for attention and just being willing to share her space. Someday I hope she'll do it via conversation -- maybe even blogging?

A few caveats: Autism has its own special layer of challenge when it comes to social capital -- the whole "social deficit" part of the equation, in all its many challenging aspects. I also have some hesitancy about the way "social capital" may tend to define as "poor" those who prefer a less-socially-interactive existence just in general.

Still, I think as a concept "social capital" does a whole lot better than "natural supports" in contributing to what it means to envision people with disabilities living lives of inclusion in mutually-supportive communities.

Back to blogging as social capital -- it occurs to me that a year ago I was doing much better at the give-and-take of social-capital building, the commenting back and forth on other blogs that led to such awesome blog-conversations here. So out of the social-capital loop am I at the moment, in fact, that I've failed to acknowledge receiving an award way back on my New Year's Satisfaction post, where Briane P over at Thinking the Lions bestowed upon me the Smart Cookie award:

Fortunately in this case I've left myself an out by my previous declaration way back in 2008 that I don't really "do" awards. Unless I feel like it. With this one I'm supposed to thank the giver (Thanks, Briane!), link back to him in my post (here ya go), list four little-known facts (oh well), and link to other Smart Cookies (I guess that would build social capital, eh? Oh well, again.)

Anyway, back to the Capitol environs for me, for another heapin' helping of Partners in Policymaking. Stay tuned!

The Peking Acrobats, Redux

My favorite post from my first year of blogging (all the way back in 2008!) was called Spin, Spin, Spin. It referenced an occasion when I'd gone as a chaperone with Rose's class on a field trip to see the Peking Acrobats, and one particular part of the act where a troupe of women danced while spinning multiple plates on sticks. I mused that the spinning-plates act had a great deal in common with my life!

Actually the controlled chaos of the field trip itself was something of a spinning plates act. Busloads of kindergarteners and first-graders from all over the district descended on Madison's Overture Center, vying for downtown space to disgorge their noisy wriggling kid-loads, who then all had to be organized and seated for the show. There was enough noise and waiting that I recall it was at least mildly anxiety-producing for Rose at the time, at least until the show started.

It wouldn't have been Joy's scene AT ALL.

In fact, four years later, it still isn't. Joy doesn't like chaos, or noise, or waiting. (Heck, who does?) She doesn't cotton much to sitting still, either. Sitting through a long performance in an unfamiliar venue after the chaos, noise and waiting would be a recipe for deep unhappiness, for Joy and for those around her.

When the note came home that Joy's class will have their turn to see the Peking Acrobats this year, I thought hard about how to do it. Of course we could demand that her staff figure out how to make the trip work for her, but at what cost -- and what are we trying to teach? Surely one day we'll be able to manage large public performances: maybe with accommodations, maybe without. But that's a goal to work on in increments, not by jumping into a situation where she'd be locked in to staying on site the full time because of bus transportation, in a noisy sea of hundreds of kids in a huge strange theatre. This is not, we decided, a field trip we want to inflict on Joy at this time.

We got a video instead.

Librarian that I am, I first went looking for a DVD to borrow. It turned out, though, that the only video out was too recent to be in libraries, a just-released DVD from the Peking Acrobats 2011 tour. So we bought a copy of our own.

Turns out there wasn't an online-ordering option, so I had to make a call and talk to a person. The call brought up some interesting echoes of some of the readings we'd done for the Partners in Policymaking program that I'm participating in, that started last weekend. (My next post will have more description about the program, I promise... it's off to an amazing start so far.)

Two of the readings, both by Kathie Snow of DisabilityIsNatural.com, talked about how parents and professionals tend to un-necessarily blab details about their kids'/clients' disabilities in situations and ways that we wouldn't dream of talking about people without disabilities. Here's a sample from The Problem with "Problem" (.pdf):

We don't usually share intimate details of our own lives with casual acquaintances, but we routinely expose the lives of people with disabilities for public consumption. Parents, accustomed to reviewing a child's history with every professional they come in contact with, frequently get in the hapbit of blabbing very intimate details about their children to other parents, educators, and even strangers in the grocery store! ... In general, we reveal intimate details about people with disabilities even though they have never given us their permission to do so. How dare we behave in such an arrogant and patronizing manner?

Even after this, and an additional piece called The Lost Art of Manners (.pdf), I still (gratuitously) told the guy on the phone when ordering the video -- why I was doing it. That I had a daughter with developmental disabilities whose class was going on a field trip to the Peking Acrobats show, the live show wasn't going to work for my girl, so the video was a substitute experience. It was a snap decision, quickly balancing the readings vs. a vague impulse in favor of awareness-raising.

On the one hand, I so totally didn't need to do that. If I'd had a chance to order online, I'd have typed in a bunch of keystrokes and the order would have arrived all depersonalized, no story attached at all.

On the other hand, the fellow who took the order seemed grateful to know that we valued the show enough to make an extra effort. He ended up sending us a free DVD of Jigu! Drums of China, another act represented by the same production company.

I feel pretty good at this point about the decisions we've made regarding this upcoming field trip. Others might disagree, be appalled, whatever.

Actually, the whole disability-mommy-blogging enterprise leaves lots of room for disagreement, appalled, whatever. Or mommy-blogging in general, as we spin intimate life-details into the blogosphere for the consumption of anyone who happens to wander by. In fact, as far as social media is concerned, things have changed since 2001 when Kathie wrote "We don't usually share intimate details of our own lives with casual acquaintances." Facebook and blogging and YouTube et al. have altered that equation immensely, disability or no.

It's a balance. I'll have to continue to cogitate, both about this blog and about my in-person conversations. As Joy continues to grow up, as I learn more and my thinking evolves, the balance will likely change.

Meanwhile, speaking of changing the balance -- I notice as I read how I described my life in the Spin, Spin, Spin post -- there was nothing about policy advocacy in there. No spinning plate designated for legislative contacts or Board work (or protesting, for that matter). How things can indeed change over the course of a couple of years!

Stuff We Don't Let Her Do

So I was home with Joy today in between school and her afternoon therapy session, and she was happily watching a video upstairs in the living room, and I thought "Surely it wouldn't do any harm to sneak downstairs and answer a quick e-mail, right?" So I did that, and then one e-mail led to another, and then I quick peeked at Facebook, and Joy was still making happy sounds and so several minutes did go by before I trotted upstairs again to check.

And there was Joy, with her sister's new Christmas camera, which had been imprudently left on the mantel that morning.

The camera was on, rather surprisingly, since it's one of those little streamlined smaller-than-a-deck-of-cards cameras with a not-at-all obvious on/off switch.

More surprising still were the photos on the camera.

Uh-huh. Joy had been taking pictures.

Here's her foot on top of last year's Christmas fleece-boa:

Here's an artistic blurred shot out the living room window, with a bit of a reflection from the video that was still playing:

Here's a shot of the cabinet under the TV:

And here's a partial self-portrait (there were more complete ones too):

My girl took thirty-six photos before I showed up and put an end to the fun.

We didn't teach her how to do it. We've never let her so much as hold a camera before.

WHAT ELSE can she do that we've never let her try?

She Has a Dream

I have a dream that my four little children will one day live in a nation where they will not be judged by the color of their skin but by the content of their character.
--Dr. Martin Luther King, Jr.

In the middle of a conversation about school earlier this week, Rose told me about an activity that her class had done. In anticipation of the holiday in honor of Martin Luther King, Jr., they talked about King's famous "I Have a Dream" speech, and then they were assigned to come up with a dream of their own to share with the class.

Rose's dream was that her sister Joy would get a good education and go to
college.

It shouldn't take a prophetic voice to articulate what I grew up with as a basic expectation in my own family. But sometimes it does.

We've been cautious about educational expectations for Joy, as you may well have picked up if you read my reflections on the ABLE Act. It's hard to see college when your first-grader still doesn't meet most of the standard criteria on the kindergarten-readiness lists.

And yet, it's all too easy to fall into the "soft bigotry of low expectations." (That phrase has entered into the conversation so completely, I was surprised when I looked it up to see where it had come from. I see it as rather an ironic source to use on this day of all days, but there's an important truth carried in the words.)

Here's how Kathie Snow, who writes at DisabilityIsNatural.com, put it in her essay "The 'Right' to a Normal Life" (emphasis is mine):

Is a child with a disability given an allowance? Expected to help around the house? Taught how to use the phone? ... Is the child expected to participate in and experience the traditional, ordinary, typical activities of her brothers, sisters, and similarly-aged children? Is she expected to achieve an academic education which will enable her to attend college, vocational school, and/or be employed in a real job? Do we expect the child to leave home one day, live on her own, get married, and live a REAL LIFE as an adult? When we don't encourage and provide typical experiences (and have high expectations), we're robbing the child of the "right" -- the opportunity -- to lead a normal life.

I had just read Snow's piece as preparation for a program I'll be participating in over the next six months, Wisconsin's Partners in Policymaking, a training for self-advocates and family members who want to learn to influence public policy around issues of developmental disability. In fact, I'd read it the very morning of the day that Rose told me of the dream she'd shared.

No coincidences!

I know I'll be paying a lot more attention to our expectations for Joy in the coming months. In a couple of long-overdue baby steps, we've begun serving her meals on the same ceramic plates as the rest of the family, instead of the plastic pocket-plates she's used up to now, and transitioned her to Rose's beloved "Cooshie Booster" instead of the buckle-in booster that's been the default (she's way past big enough not to have to buckle in at mealtimes!)

There will be other changes too -- small steps can go big places.

If we're going to live in a nation where Joy will be judged, not on the elements of her disability, but as a capable human being who will spend her lifetime learning and growing and achieving, we need to lead with high expectations ourselves.

Satisfaction

During the holiday-preparation whirlwind earlier this month, I also had the chance to help out a couple of students doing end-of-semester projects relating to special needs. My niece interviewed me by e-mail with a series of questions about Joy's diagnosis and development and how our family manages. Between my answers and this blog, she wrote up a paper that earned her a 100% grade, highly satisfactory!

The other interview was by phone with one of the LEND trainees we mentored this fall, who had an occupational-therapy survey for me about OT goals and progress. There was one flavor of question that came up again and again, that I struggled with answering. The question had to do with satisfaction, on a scale of 1 to 10... how satisfied are you with the goal? How satisfied are you with your child's progress?

It's not easy to assign a meaningful number to a question about satisfaction! Thinking about it later, I realized that for every one of the progress-questions, I could have truthfully answered almost anything between 1 and 10 each time.

Of course I'm not satisfied! How can I be satisfied, when Joy is so clearly behind her peers in comparison, and likely always will be? We can't let ourselves be satisfied. We're always going to have to keep striving, pushing for the next step, giving it our all to achieve... first the possible, and then the impossible!

Of course I'm satisfied! Look how far this girl has come, look what wonderful progress she's made this past year! She's working with good people who are responsive to her needs and to our participation, and the forward movement is obvious. We've had extra affirmation of that in the visit we've got going on from GrandpaJ and GrandmaJoy right now, and what they observe in Joy just since their last visit in September!

Of course there must be a balance.

Satisfied can't mean "OK, we're done, no need to work any more." In our goals for Joy, our goals for ourselves, our goals for our state and country, quitting is not an option. We can't be stagnant-satisfied.

On the other hand, there is in our culture an almost pathological urge against satisfaction, against having enough and counting our blessings. We are bombarded with messages urging us to consume, to buy, to live better by acquiring more. The country is only now waking up to the pathology of the insatiability at the tippy-top of the income ladder, the barons whose individual wealth is greater than the GDP of entire countries, who are in the process of buying United States' political system. How many billions are enough, and at what cost to how many of the little people down at the bottom of the heap?

How can we learn to balance a truly grateful satisfaction with an appropriate moving-forward?

I'm reminded of the Jewish Passover song Dayenu, which tells of God's great gifts to the children of Israel: bringing the people out of slavery in Egypt, the miracles of being led and fed in the desert, the gifts of the Sabbath and the Torah. As each gift is listed, the chorus affirms "Dayenu" which translates as "it would have been enough for us" -- or, as in the version I first heard, "it would have satisfied us."

And yet, the scriptures tell us one story after another of the exodus in which the people were not satisfied and complained to Moses, complained to God. It would have been better if we had stayed in Egypt as slaves rather than come out here into the desert -- at least there we had enough to eat!

Satisfaction is a choice, an attitude, a commitment, whether we remind ourselves in song or otherwise.

I blogged about it only in passing, but last year instead of traditional New Year's resolutions, I chose three words to shape the year: active, tidy, relax. They rather morphed into "active, organize, relax" as events in Wisconsin exploded in February, and I never did manage the "relax" one very well. But active and organize took on new dimensions!

This year, I'm looking at these three:
balance
forward
kindness

Balance in the right kind of satisfaction; balance in schedule; balance in mindset.

Forward for Wisconsin; forward in goals for myself and goals for Joy; forward rather than stagnation.

Kindness in everything -- to myself, to those who disagree with me, to everyone I encounter.

What three words would make a satisfying 2012 for you?