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.

ABLE Accounts and "A Bad Place"

UPDATE -- This post from 2009 had somehow disappeared from the web into "draft" status! I'm glad to retrieve it, because it's time for an update. The Achieving a Better Life Experience (ABLE) Act failed to pass in its 2009 incarnation, but was re-introduced in November as the ABLE Act of 2011. The link is to a widget from Autism Speaks that will help you to contact your federal legislators and ask them to sign on as co-sponsors. Please read the piece below -- it may be familiar, if you're a long-time reader of this blog! -- and then please click and contact. Thanks so much!

= = = = = = = = =

"You're in a bad place."

That's how the lawyer summarized our situation, with regards to saving for Joy's future needs.

Not long after the births of Rose and Joy, we started saving for their future higher education needs, with our state's 529 educational savings plan, a nice tax-exempt way to be saving and planning ahead. We have a relative who has done the same for them in another state, too.

Rose is, pretty obviously, a very good bet for higher education eventually, little human dictionary and all.

With Joy, the educational trajectory has been so confusing. We really have no idea what will be going on with her by the time she finishes school (or the school system finishes with her). Heck, she's only four [update: now she's seven, and we still have no idea!]

But as she gets closer to entering the school system and yet keeps regressing away her various gains, we started to wonder about the wisdom of the 529 accounts for her. The rules of the 529 are clear: you can only use it for higher education expenses. If you take it out for anything else: big honkin' tax hit.

We surely don't want to sell Joy short, but it seems pretty clear that she's going to have some needs beyond the norm as she matures. Those needs may have to do with higher education, but they may not! We don't want our savings for her to be locked into something that's not flexible enough to meet her needs.

That's the situation that sent us to the attorney, to ask about the potential of a special needs trust.

That's the situation he shook his head at, and called "a bad place."

The thing is, a special needs trust isn't designed to be a place for you and other relatives to sock money away incrementally, like the 529 for higher education. The special needs trust is a vehicle where you move a big chunk of change for the later support of a disabled person, and it's highly hemmed around with restrictions to keep unscrupulous folks from using it as a tax shelter when disability isn't really the issue. You need to be very sure you've got an ongoing disability situation before you start down the special needs trust road, and then it's definitely lawyer-business (i.e. attorney's fees) to set up, unlike the 529 that you can do on your own.

But the 529 isn't a great bet for her either, given the uncertainty of her situation. The attorney didn't know what to advise us, except that there weren't any really good options for us.

We were told that federal legislation had been introduced in the past, to create a vehicle similar to the 529 but for expenses related to disability. But it had never managed to go anywhere.

Except that there's been a big election between then and now! [Update: hmm, the 2008 elections didn't manage to make the difference. Maybe there will be some traction as elected officials campaign for 2012?]

And... the legislation has been introduced again, both in the House and Senate, on February 26, 2009. It's called The ABLE Accounts Act of 2009 (ABLE stands for Achieving a Better Life Experience), and the bill numbers are H.R. 1205 and S. 493. [Update: the 2011 version bill numbers, introduced Nov. 15, 2011, are H.R. 3423 and S. 1872]

Here's a summary of the legislation (updated link & summary for 2011):

The ABLE Act -- introduced with bi-partisan support in the House (HR.3423) by Congressman Ander Crenshaw (R-FL) and Congresswoman Cathy McMorris Rodgers (R-WA), and in the Senate (S.1872) by Senators Robert Casey, Jr. (D-PA) and Richard Burr (R-NC)-- would amend Section 529 of the Internal Revenue Service Code to allow individuals with disabilities and their families to deposit earnings to tax-exempt savings accounts. The funds could be used to pay for qualified expenses, including education, housing and transportation, and would supplement, not replace, benefits provided through private insurance, employment or public programs.

And what could it be spent on? Glad you asked...

Qualified disability expenses would include: school tuition and related educational materials; expenses for securing and maintaining a primary residence; transportation; employment supports; health prevention and wellness costs; assistive technology and personal support; and various miscellaneous expenses associated with independent living.

Here is a link to the text of the bill itself (Senate version for 2011, in pdf). One element that I was glad to see: it looks as if one would be allowed to transfer money from an educational 529 into an ABLE account without the tax hit.

[In 2009] the bill was introduced in the House by Ander Crenshaw (R-FL), with co-sponsors Congressmen Patrick Kennedy (D-RI), Cathy McMorris Rodgers (R-WA), and Kendrick Meek (D-FL). In the Senate, it was introduced by Senator Robert Casey (D-PA), Senator Orrin Hatch (R-UT), and Senator Christopher Dodd (D-CT), and co-sponsored by Senators Richard Burr (R-NC), Edward Kennedy (D-MA), and Sam Brownback (R-KS). Update: in 2011, it was sponsored in the Senate by Robert Casey, Jr (D-PA) and Richard Burr (R-NC); in the house by Ander Crenshaw (FL), Chris Van Hollen (D-MD), and Cathy McMorris Rogers (R-WA). Bipartisanship, can you even believe it?!

Please take a moment to drop a note or call to your senators & representative urging them to support/co-sponsor this bill. There's a handy page for generating constituent support letters over at Autism Speaks, or you can look up your elected officials' contact information here and contact them directly.

If you can take a few minutes to do this, that would make us so happy! And you'll have earned the right to come back and brag about in the comments about how you're helping us get to a better place!

Do let me know if you have any questions, either in the comments or via e-mail.

Wisconsin Attack on Medical Assistance (and Democracy)

For years, advocates in Wisconsin have been working to make life better -- in some cases, make life possible -- for people with disabilities.

The process has been slow. It has taken years to create the programs and put the funding in place to allow people with disabilities to live a meaningful life in their communities, in their homes, with the healthcare support they need. Bit by bit, but with much further to go, the argument has moved forward: if you don't want to go back to the bad old days of warehousing people in very expensive institutions where lives were unbelievably difficult and generally much shorter, the public needs to step up and provide support.

This successful argument has won us the MA waiver that provides intensive therapy for children with autism.
We've won funding for health care.
For respite care.
For the home modifications that keep people safe and mobile.
For the supports that allow adults with disabilities to live in the community.

On Friday February 11, Governor Scott Walker proposed a so-called "budget repair" bill that will allow him and his appointees to restructure and slash Medical Assistance programs in Wisconsin. If this bill passes, the future slashing will take place...

Without public notice. Without public input.

The budget bill was released on Friday. A public hearing was announced Monday noon to take place on Tuesday at 10am, less than 24 hours notice.

They want the legislature to rubber-stamp this bill with a vote THIS WEEK. (And they claim they have the votes to do it.)

Very few people even know about the provisions of the bill impacting Medical Assistance.

Just so you can see I'm not making this up, here are some links to news articles...
Walker budget proposal would impact how health care works in state
Budget repair bill gives Walker free hand to revamp, cut Medicaid programs
State attorney said Walker's Medicaid plan raised "potential constitutional issues"

The bill also eliminates outright the agency that coordinates Joy's respite care services, the Wisconsin Quality Home Care Commission. (The cuts in the respite funding itself will surely come later. Without public input or notice.)

Why don't people know about this?

Two major reasons:
1) The bill is loaded with outrages. The one that has been in the headlines, that people know most about, is the proposal to strip most collective-bargaining power from public employees, so that (for starters) the governor can implement a massive cut in take-home pay via drastically-increased employee benefit contributions. [For JoyDad and myself, the loss of income amounts to half our mortgage payment every month, the equivalent of a 150% income-tax hike.] The union-busting, an outrage in and of itself, also sets the stage for immense cuts in public education...

2) The timeline is appallingly, undemocratically short. The advocacy groups have not had time even to properly analyze the Medical Assistance provisions in the bill, let alone inform the public to get to the hearing and tell their stories. The hearing, by the way, is technically still underway as I write, though they adjourned temporarily at 3am and cut off the ability for further people to sign up to speak. People are sleeping-over in the Capitol rotunda in Madison tonight. I submitted my written testimony yesterday morning, but could not stay the whole day awaiting my turn to speak.

As I said in a letter to the editor that was published yesterday, nobody is arguing that there's not a serious budget issue in our state. Some pain will have to be shared. Tax increases will have to be a part of this puzzle.

Governor Walker's approach so far, however, has been to hand over millions of dollars in corporate tax giveaways during a special-session in January this year. In other words, making the hole bigger, so that the coming cuts will be even greater.

And the mechanism that allows unfettered cuts to Medical Assistance, without so much as public notice let alone public input, is moving through practically un-noticed.

Spread the word. Call the state legislators, or e-mail them if their phone mailboxes are still jammed full like they were yesterday! Write to your local paper. Hit the streets if you're anywhere near a rally. The Capitol will be alive with protest today, what with the Madison schools closed as the teachers go out to advocate for Wisconsin public education -- JoyDad and I support them wholeheartedly.

But if the MA issue continues to fly under the radar, the protests won't get that part of the bill so much as tweaked.

Please help!

==========
P.S. A little bit of wonky sausage-making detail for those who are interested in such things! According to the balance of powers in the State of Wisconsin, MA changes have had to go through a legislative process, either through direct legislation or through administrative rule-making. Both approaches require public hearings.

The budget proposal changes the requirements for the process. Changes would be able to be made via "emergency rule," regulations which could be created by the Walker-appointees in the Department of Health Services. Ordinarily, hearings must be held on emergency rules, and then after a specified period of time, the emergency rules must be converted into final rules, with another round of public hearing. However, according to the budget proposal, the new "emergency rules" slashing MA could be passed without hearing by the Joint Finance Committee, simply by the committee declining to take them up. The JFC is currently 8 Republicans, 4 Democrats. The committee WILL DECLINE to take up any proposed emergency rules that result in MA cuts. So the emergency rules will simply pass into effect in 14 days. No public notice, no public input. The bill also waives the requirement for the emergency rules to be revisited and converted into final rules. No chance for public input and changes there either.

P.P.S. As with any post here on Elvis Sightings, I am expressing my own personal opinions, which are not to be construed as representative of any organizations or associations to which I may belong.

P.P.P.S. TinyURL for this post is http://tinyurl.com/67awwje -- please tweet widely.

Tagged, Redux

I've circled back to blogging about tagging several times now. My first Tagged post was about Joy's Project Lifesaver radio tag, for tracking purposes in case she wanders. (Now that she's in kindergarten, we're extra-glad to have that safeguard.) Just lately, I succumbed to the lure of tagging via blog-meme.

Our latest new form of tag in the JoyFamily is a disability hang-tag for access to priority parking spaces.

Parking lot safety for Joy has long been a concern of ours, but the possibility of a hang-tag didn't really click for me until I had a conversation with Joy's special educator about dropping Joy off at the start of the school day. I've got my work-schedule arranged so as to be able to do both drop-off and pickup for the girls at school, so we aren't taking advantage of the "short bus" that drops kids right by the back door. If you don't bus, parental drop-off is on the far side of a busy street, with a walk either up or down-hill to the crossing guard. As an alternative, Joy's special educator mentioned that some parents do a quick drop-off in the handicap spots. Of course, for that you need official dispensation.

Earlier in our journey I'd have had more of an internal debate. ("But she's not handicapped -- she's just delayed a little -- we don't really need this -- why mark her as more different than she already is" -- etc.) At this point, though, I've learned to agonize less over taking advantage of available resources and designations that can make our lives easier. The application for the tags was a simple form, just a download away. It needed a physician's approval, which Joy's doctor gave easily on request. Two hang tags soon arrived in the mail, one for each car's glove compartment.

So far, I have used them sparingly: only at school, and only at drop-off. In general I'd prefer to have Joy learn to walk with me and her sister and the other kids. Sometimes we make it the whole 15-minute walk home! However, if there's rain and puddles, or new snow, the walk becomes too much of a stimmy distracted battle. It's exhausting, not entirely safe, and sets up a miserable mood for turning Joy over to school staff. So on those days, out comes the tag and we drive practically up to the door.

I haven't yet used the tag in a public parking lot yet, but I sure feel better knowing we have the option. Parking lots can be scary-rough -- there was a set of helpful parking-lot tips the other day at Stuart Duncan's blog with suggestions for the situation. (I added the hang-tag suggestion in the comments!)

It has crossed my mind that, with Joy's invisible disability, we might come in for some pushback from the self-appointed parking lot police -- the folks who see fit to call challenge if they see someone they don't think looks disabled get out of a car in a handicap-accessible spot. I was reminded of this yesterday when Rachel posted at Journeys with Autism about the barrage of doubt and disbelief that people with invisible disabilities often face. She mentioned one woman who developed a snappy comeback for the doubters: when someone issued a "you don't look disabled" parking lot challenge, she'd fire back, "And you don't look like a doctor!" (Rachel's post and the comments were much more detailed and nuanced than this little example; well worth the read.)

I gave a quick delighted high-five in the comments about that comeback -- it's so the perfect response that you wish you'd thought of at the time! I've been re-thinking my enthusiasm somewhat, though. It strikes me that if any parking lot pushback were to come our way, I'd rather be prepared with a gentle, educational answer than a snappy zinger. That way if the challenger turns out to be a well-meaning soul and open to new ideas, I might be able to send them away thoughtful rather than cranky/defensive. And if they really deserved the edgy comeback after all -- well, then I'll have been nicer to them than they deserved. Which wouldn't be so bad.

I should make clear that my re-thinking is in no way meant as a prescription for how I think everyone ought to react to a parking lot challenge. Just my own thoughts and planned approach. A person with an invisible disability who has had it up to HERE with spending precious energy trying to educate people who won't listen anyway -- may well choose a different approach entirely.

The snow has been falling all day today. Glad we've got that hang-tag for tomorrow.

Glancing Back

Two back-glances today!

First up is a linky-list called Blog Gems: Air Your Archives that runs every two weeks over at The King and Eye.

The current airing-of-the-archives asks: "Point us all in the direction of your first public post"!

Join in the Blog Gems airing of the first public posts (as I did! fun game!) or visit mine directly, all the way back to July 2008.

The other glance back is just a week, to my Dec. 14 post wondering why one doesn't hear the phrase "Some of my best friends have autism!"

I just picked up a fascinating new insight from a comment to a post called "She's had classes in autism, people. Don't offer any suggestions." over at A life less ordinary. The original incident that's being discussed is a little convoluted -- you can go read about it there if you like. More interesting to me was the first comment on the post. The comment suggests that in the case of autism, the formulation of the "Some of my best friends" line goes more like "I've worked with people with autism" (or, as in the original incident, "I've had classes in autism.") The claim is a little different, but the use is similar: it can be used as cover for whatever unfortunate or offensive stance about autism one might stake out.

I didn't mention it in the earlier post, but I'm still sort of chewing over the thought of whether/how the claim of such an association can be used for good (as opposed to being used as cover for an opinion you know will mark you as insensitive/bigoted/whatever). It occurs to me that I stake out my bona fides as the parent of a child with autism all the time. But then again, I don't think I've ever used it to say, "I've got nothing to learn from you," or "Don't get me wrong, I'm not prejudiced against people with disabilities / autism."

Still cogitating!

Some of My Best Friends...

It's interesting, but sometimes claiming friends can be the cherry on top of a big credibility-loss sundae.

Consider the statement that starts "Some of my best friends are..." and ends with the naming of a minority group, generally a minority group which the speaker has just been disrespecting. It's such a cliche that I'm amazed anyone tries to defend themselves anymore with a "some of my best friends are" statement -- but it happens, and publicly too.

One example from the news lately would be John Cook of the State Republican Executive Committee of Texas. He's been leading a charge to replace the Texas state Speaker of the House, Joe Straus -- who is Jewish -- with someone with "Christian conservative" values.

But I'm not a bigot, Cook told a reporter for the Texas Observer.

"They're some of my best friends," he said of Jews, naming two friends of his. "I'm not bigoted at all; I'm not racist."

Uh-huh. No bigotry to see here, folks, let's move on.

I'm also reminded of an incident at a local business a while back, where I got into a casual conversation with the proprietor about the history of the area since the (long ago) founding of his shop. I didn't see it coming, but his reminiscences turned suddenly ugly as he began ranting against the folks he blamed for causing all the problems in our neighborhoods and school system: those gang-banging black low-lifes who'd come up from Chicago to take advantage of our fair city's generosity. As he saw me scrape my jaw off the floor and start to frame a rebuttal, he quickly interrupted himself, "But don't get me wrong, now. Some of my best friends are black!"

Uh-huh. Sure. I'm quite positive I haven't gotten you wrong.

So why am I writing about this on Elvis Sightings?

Because it occurs to me -- I don't think I've ever heard anyone say:

Now, don't get me wrong, some of my best friends are autistic...

I'm no bigot -- some of my best friends are disabled!

Try plugging those "some of my best friend" phrases into Google. Nada, unlike if you plug in Muslim, black, gay, Hispanic, Jewish, Mormon.

Why is that? It isn't as if people don't blame people with disabilities for certain societal ills -- like, for example, supposedly sponging up a disproportionate share of tax-supported resources. Or for "burdening" businesses with onerous accessibility regulations.

Is it that disability isn't a front-page, hot-button issue on the national scene right now? Unlike, say, gay marriage, or building a Muslim cultural center in New York, or electing our first president of African descent, or immigration across our southern border.

Is it that the disability rights movement isn't on people's radar, unlike civil rights or gay rights or women's rights? (I'll freely confess to being awfully ignorant on this score before Joy came along.)

Maybe people without disabilities don't even notice the discrimination? Even -- or especially -- when they're/we're complicit in it?

Does it perhaps not even occur to some folks that having best friends with disabilities... is even possible? (Another confession: my circle of close "meat-space" friends is not nearly as diverse as it might be, and disabilities are one aspect of that lack of diversity.)

Maybe it's a combination of the above, or some other aspect that hasn't occurred to me?

What do you think?

UPDATE 12/20/10: There's a bloggy conversation going on today about a blogger who disparaged comments on her (otherwise quite compassionate) autism-related post, comments from a person with autism and a parent of a child with autism, because she'd "had classes in autism" and doesn't like receiving unsolicited advice. Check out the first comment on this post about the issue for why this may be related...

==============

And, welcome to anyone who came over here from Elvis Sightings' new Facebook page. After all, some of my best friends are on Facebook! (Hmm, something doesn't sound quite right about that...)

Healthy People With Disabilities

I've got an Olympics story for you. And no, it's not about how the one ice-dancing team got decked out in faux-aboriginal costumes and skated to music that included the didgeridoo.

It's about Special Olympics and public health.

One benefit of the Special Olympics program that I had not been aware of is the component that offers health screenings to the athletes. In the 1990s, Special Olympics began compiling some alarming statistics based on the results of their screenings in their Healthy Athletes program. They were finding uncorrected errors in vision (up to 85% of the athletes), and major oral health issues (68% of the athletes screened had gingivitis, 33% had at least one obvious dental decay). They ended up referring some athletes directly to the emergency room for acute pain!

Special Olympics commissioned a literature review through the Yale University School of Medicine, which reported in Dec. 2000 that compared to the general population, people with intellectual disabilities -- then called mental retardation -- have:

• Four times more preventable mortality
  
• Less access to primary and specialty health care providers, including physicians and dentists
  
• Higher rates of obesity, otitis media, asthma, cardiovascular disease, depression and other mental health conditions.

A Special Hearing on Promoting Health for People with Mental Retardation was held in the spring of 2001 by the U.S. Senate Appropriations Committee, and the Surgeon General called a conference on health disparities that December. Health disparities for people with disabilities, developmental and otherwise, have thus been on the national radar for about a decade now. There's a section in the national Healthy People 2010 goals that recognize the disparities, and the next round (Healthy People 2020) now includes draft goals like:

• Reduce the proportion of children and adolescents with disabilities who are reported to be sad, unhappy, or depressed.
  
• Increase the proportion of people with disabilities who report having access to health and wellness programs.
  
• Reduce the proportion of people with disabilities who report unmet need for assistive devices, service animals, technology services, and accessible technologies they need.

One slide in the presentation that struck me in particular involved numbers coming out of Oregon in 2006 on health/behavior risk factors. 27.3% of the people with disabilities in the survey were smokers, as opposed to only 19.3% of people without disabilities. 30.1% of the people with disabilities had obesity issues, compared to only 17.9% of people without disabilities.

Another slide came out of Ohio State University on what health-care providers were likely to talk about when seeing a patient with a disability. Providers were more likely to ask about pain, stress, depression, work and hobbies. They were less likely to discuss smoking, blood pressure, cholesterol, mammograms, colorectal exams, or sexual activity.

The class session was a teleconference, reaching multiple LEND programs across the country. It was inspiring to be a part of a group of up-and-coming professionals who will be working with people with disabilities, discussing how one might incorporate awareness and progress on these issues into one's personal practice but also on a larger (leadership) scale. I hasten to add that we did not manage to solve the world's problems in a single teleconference... but even just having the awareness among the LEND group was an important step. I know that I'd never thought about this on a macro level.

Micro level... keep advocating for your own child, and don't let the basic health stuff get too drowned out by the special needs.

Macro level? Whew. Big issues.

Much Has Changed

Think for a moment about what it's like when you move to a new neighborhood.

When you move in, you're the new ones on the block. As far as you know at the moment, everyone else has been there... forever.

Then of course as you get acquainted, you discover that the retired couple over here have been in their house 40 years, this family over there came ten years ago, that house over there has turned over three times in six years, etc. It was fun for us to eventually learn that our home is built on land that used to be an orchard!

I've been feeling a little bit that way about coming into the disabilities-support system. For anyone coming in new, Birth-to-Three is simply there, free appropriate public education is a right not an innovation, etc.

But, as Barbara wrote in the comments on my last post,

We are less than a generation away from closeting children who were recognized early as different to an attitude where the threshold of good parenting is activism.

It was almost as if she'd been in the LEND seminar presentation this past Friday...

We had three speakers. The first, a social worker, has a younger brother with Down Syndrome born in 1959. The second, a nurse, is guardian to a man with multiple disabilities who is (I think) about my age. The third, a family support staffer, has a daughter with Down Syndrome born in 1988.

When the social worker's brother was born, the latest child in a large Chicago family, moms stayed in the hospital for a week or more after the birth. This mom came home as usual a week later, but the baby didn't -- they were keeping him to "help" mom accept the "inevitable" outcome that baby would be institutionalized his whole life. Mom & Dad eventually said NO and brought him home, and later went on to help found the Mongoloid Development Council, which eventually became the National Association for Down Syndrome. Public school education was almost unthinkable; his good fortune was in his parents, and that the recently-elected President Kennedy had some energy and vision around disabilities on account of his sister Rosemary. He eventually got his education at a new Kennedy school in Chicago, though it did mean living away from home.

The nurse entered the life of the man to whom she serves as guardian when he was 22. For much of the first half of his life he lived in an institution, and in foster care. He did not overlap much with P.L. 94-142, the legislation that first mandated public education for people with disabilities (regulations went on the books in 1977, to be implemented by 1980); however, he did catch the wave of the Medicaid waivers that allowed for long-term care supports in the community, such that though he needs round-the-clock care, he lives in an attractive house next to a park, together with three other men who need a similar level of assistance. He has an impressive array of supports, from job coach to transportation to the continuous onsite care.

The family-support staffer gave birth to her daughter in 1988, the middle child of 3, who was diagnosed with Down Syndrome within a day. Within weeks, they had Early Intervention on their doorstep! That early-childhood support was invaluable, and public education was available as well; however, it was assumed that she would go to a separate school. There was a procedure in place, though seldom used, to get a child "mainstreamed" in the regular school: you had to get the teacher to agree, and that's what they set out to do. The woman who agreed to be this girl's kindergarten teacher had such a wonderful experience with her that she moved up to teaching first grade the next year to accompany her student, and then went back for more schooling to become a special educator! The young lady graduated from high school at 21, and has a job at a local brew-pub. However, she still lives at home, though she would surely be capable of living in the community with the right supports; as she transitioned into adult services in 2007, she got a letter informing the family that the waiting list for "residential placement" was ten years. (Gulp.)

Lots of change. Lots of activism, parental and otherwise.

Lots of work yet to do.

Another Arena for Inclusion

Today's slice of my parent-trainee experience has to do with the social work class that is part of the LEND trainee requirements in our program: Social Work 644, Issues in Developmental Disabilities.

It's a distance-training course, that was originally conceived with the lectures broadcast on public television. Now the lectures and course outline have migrated to the web, where they are freely available (for sure until February 2010 at least, at which point funding issues may become a problem). Let me give you that web site again, http://www.iidd.wisc.edu/. Quickest way to the lectures is the three links at the top of the page, Module A, Module B, Module C. Of course to get credit for the class (academic credit or CEU) you have to register & pay, which gets you access to the readings & assignments & exams. OK, that's my public-service announcement for the day!

If you actually "take" the class, there's a pre-requisite document that is so important it's attached as an appendix to the syllabus. Here's what the syllabus says:

Throughout your writing in this course, you will be expected to write using Person-First Language. A required reading, "But I Don't Have a Disability!": Writing Inclusive Documents is offered in week 1... Person-First Language is expected in student exams and discussion postings and points will be deducted for inappropriate use of language.

Elvis Sightings readers who hang out in disability-awareness circles will have encountered this issue already and formed their own opinions, which I'd love to hear in the comments! Person-first language is not new to me either, and it's how I blog. But my family and "meat-space" friends might appreciate a closer look at the principles, and the controversy (the latter of which I've not really yet seen addressed related to the course.)

The idea of respectful and person-first language in writing about people with disabilities is about a whole lot more than "political correctness." It's about changing attitudes, challenging stereotypes, breaking down barriers, treating people like people instead of some kind of marginalized other. In a word, it's about: inclusion.

Here are some examples from the Inclusive Documents paper:

• Instead of the disabled, the crippled, the handicapped, a cripple or invalid use persons or people with disabilities; disabled persons or people so that you will put people first and avoid generalizing people as if they belonged to a disability community.
  
  
• Instead of confined, bound, restricted to or dependent on a wheelchair use wheelchair user or person who uses a wheelchair so that you will emphasize abilities, not limitations.
  
  
• Instead of epileptic use person who has epilepsy or seizures so that you will put the person first.
  
  
• Instead of normal (when used as the opposite of disabled), whole, able-bodied use nondisabled so that you will use a neutral, appropriate term instead of implying that someone with a disability is abnormal.

The document also makes points about how not to frame an anecdote or story:

• Don’t focus on the disability unless it is crucial to a story. Avoid tear-jerking human interest stories about incurable diseases, congenital impairments or severe injury.
  
  
• Don’t portray successful people with disabilities as heroes because of, or in spite of, their disabilities. Similarly, don’t sensationalize disability or use emotional descriptors such as unfortunate, pitiful, and so forth. Avoid “tragic but brave” stereotypes.

I'll highlight one further "don't" from the list: Avoid euphemisms such as challenged, physically inconvenienced, handi-capable, mentally different -- disability groups consider these terms condescending because they reinforce the idea that disabilities cannot be dealt with directly and candidly.

So, that's what our leadership group, and anyone else taking this class, and many others I'm sure, are being taught. And for the most part, it's all material that's already comfortable to me, and I'd encourage others to work on. Personally, I have not chosen to refer to Joy as autistic, or epileptic for that matter (she's so much more than either of those terms!)

Interestingly, the document avoids "going there" with autism. Doesn't use it as an example at all, even though the rest of the course clearly situates autism among the "developmental disabilities" next to epilepsy and cerebral palsy and others. I suspect it might be because the autism self-advocacy community has some substantial dissent when it comes to person-first language. One of the most powerful and succinct arguments for why not to use person-first language in the case of autism comes from Jim Sinclair, in his 1999 piece Why I Dislike "Person First Language". Here are some snippets of his three points:

I am not a "person with autism." I am an autistic person. Why does this distinction matter to me?

1) Saying "person with autism" suggests that the autism can be separated from the person. But this is not the case....

2) Saying "person with autism" suggests that even if autism is part of the person, it isn't a very important part. Characteristics that are recognized as central to a person's identity are appropriately stated as adjectives, and may even be used as nouns to describe people: We talk about "male" and "female" people, and even about "men" and "women" and "boys" and "girls," not about "people with maleness" and "people with femaleness"...

3) Saying "person with autism" suggests that autism is something bad--so bad that is isn't even consistent with being a person.... I am autistic because I accept and value myself the way I am.

The piece is not long, and is well worth taking the couple of minutes to read in full.

However -- my sense is that there is at least some disagreement in the autism self-advocacy community about this. Some prefer the term "autist" rather than "autistic person," some are fine with person-first language.

Personally, I am happy to refer to someone as "autistic" if they want to be referred to in that way. I feel kind of the same way about racial/ethnic labels: Do you as an individual prefer me to say Hispanic, or Latino, or refer to your country of origin? I'll do my darndest to keep your personal preference in mind, and also not bring it up if I wouldn't feel the need to specify white / Anglo / Caucasian. And when I'm talking about more than one person or don't know what an individual prefers, well, I just have to try to go with what currently seems to be one accepted term or another, and figure that a good-faith effort is fine.

With Joy, I have no idea what she's going to prefer. I've got to believe that she'll be able to tell me someday.

The World Has a Lot to Learn

So the semester is now underway, Leadership Trainee-hood and all.

My plan is to blog at least once a week on something I've encountered in my MCH-LEND studies. I figure this will be good for a couple of things -- it will help me distill my thoughts, and will (ideally) let my readers in on some of the benefits of the program.

So this week's installment has to do with a brown-bag I attended and a video that JoyDad & I watched.

The brown-bag was a report on the Natural Supports Project, an initiative aimed at finding ways for young people -- middle & high school-age -- "to participate more fully and naturally in school, work, and community activities." While they commented that people who hear "natural supports" tend to think of wooden beams or cotton underwear (!), what the project means by natural supports is people. As in, the people who are around you already, who are naturally a part of your life (i.e. not hired to be there).

The project offered mini-grants throughout the state to schools who created groups where young people, both with disabilities and without, focused on sharing activities and making space for real relationships to blossom. There are some lovely video clips on the site showing some of the results. I think for me the most powerful moment of the brownbag was when one of the presenters was describing the focus groups that the project staff held afterwards, interviewing participants about what worked and what didn't. When participants were asked about what were the barriers to making these groups work well, NOT ONE of them said, "Well, it would have worked if Sally/Sammy weren't so darn limited." Nobody blamed the disabilities, or the kids who had them! Wow.

Well, I had met both of the presenters prior to the brownbag, and so I went up to talk to them afterwards, and ended up going home with an additional resource that they had plugged during the presentation -- a one-hour documentary on DVD called Including Samuel, by photojournalist Dan Habib. Habib has two sons, a typically-developing pre-teen and a elementary-schooler with cerebral palsy. His family's journey so far, and their commitment to include their son in all aspects of life as fully as possible, twines together in the film with the stories of four other families, plus teachers and principals and disability rights activists. Not everybody in the film has had good inclusion experiences in school-based settings -- "Inclusion is an easy thing to do poorly," one school administrator points out -- but the central message is that full inclusion is something that we, as a society, need to learn to do right.

I found myself writing down quote after quote from the video. Here are a few of them:

• "Constantly worrying about Samuel's future isn't the best way to be his parents." (Samuel's mom) -- I hadn't thought about it like that before, but she's right. So many worries, but when they get too dominant, that's no way to make a life.
  
  
• "I can't limit him. Everybody else in life is going to limit him. I can't do that." (Mother of another featured child in the video, a young lad with autism)
  
  
• "All kids -- with the right supports, the right teaching methods, the right technology, can learn the general education curriculum." (This one was either from a teacher or an administrator.) I'm still chewing on the implications of this. A beautiful and radical statement. I want it to be true.
  
  
• "If we want something smooth and easy, then we're in the wrong business." (A principal)
  
  
• "The baby boomers aging, they ain't gonna call it disability, they gonna call it 'old,' but they a$$es gonna need a ramp!" (Disability activist Keith Jones, on assistive technology)
  
  
• "Is there any place in society where inclusion already exists, full-blown? and the answer is yes. It exists within a lot of families." (A principal)
  
  
• "He will teach a lot of people. Which is good, because the world has a lot to learn." (Dan Habib, Samuel's father)
  

There's a local screening of the show coming up soon, with a chance to meet the filmmaker, but JoyDad's got a gig that night. I highly recommend it to my classmates, though! For those not around here, I bet you can get it on Netflix, or check the list of PBS broadcasts -- it might be on TV in your market this fall.

Update 9/11: So this afternoon I came home to a phone message from the school district on my answering machine -- plugging the local showing of Including Samuel & meet-the-filmmaker later this month! This was a blast phone message that went out to all the school families, something that I generally associate with very important happenings like registration in August. Wowza!

Update 9/12: From the comments: Barbara just alerted me to another post on Including Samuel. If you'd be willing to host a viewing party of the film for 10 or more attendees, bop on over by Ellen and her blog To the Max before September 20 and leave a comment about inclusion for a chance to win the DVD plus party-hosting materials! Or just go peruse the post & comments -- lots of perspectives and food for thought.

Artwork

So I noticed this piece of Rose-artwork Scotch-taped to the back bedroom door:



I haven't discussed it with her. I suppose she's probably depicted herself as the one in the yellow dress with the hula hoop. Maybe those ponytails indicate she wants to fly like the birds? I don't know who the other two girls are supposed to be.

But I totally LOVE the fact that the one who's gettin' her flirt on with the only male in the picture... is the gal in the wheelchair!!

Role-Playing Rose

Just a few minutes ago, I had the privilege of overhearing Rose play with two American Girls dolls, while I was working in the kitchen and Joy was napping (or supposed to be napping, anyway).

The blonde doll, Kirsten, had "a disability of walking." Rose was her older sister. The brunette Molly was her friend.

Rose was providing a low-voiced running commentary on their efforts to problem-solve Kirsten's mobility.

"Now, grab on to this. That's good! That's good! Now, what will we do next?"

"Well, THAT didn't work..."

"OK, I know what to try. How about holding on here?

She came to me to share her pride and delight when Kirsten had succeeded in maneuvering half-way across the room.

She gets it, doesn't she?!